RRP Foundation Guestbook

Logo developed by Petra Holmstrom, 1999

Welcome to the RRP Foundation Guestbook

Thank you for visiting our web pages.

Hello my son Eric was diagnosed 11\01. We have been sugested to think about medication to slow growth. My wife and I are worried about the decision. Any info on treatments would be greatly appreciated thank you
David Poll <davidep76@hotmail.com>
Covington, Indiana - Monday, October 07, 2002 at 03:17:43 (CDT)

Hello. I was diagnosed with HPV of the vocal chords in 1991. Had about 8 laser surgeries since. I'm losing my voice again, but my ENT says he sees no evidence of pappilloma regrowth yet. Vocal chords just iritated and swollen, so my voice is very weak and hoarse. Very annoying!
Dan <dad0105@aol.com>
Georgia USA - Thursday, October 03, 2002 at 23:51:31 (CDT)

hi everybody! i´m 23 years old and i´m coming from germany! i never found some people before who has the same illness. i have papillomas since 93 and have 8 surgeries behind me, the last for 2 weeks, now i waiting that my voice comes back and it would be nice to get some emails from other papillomas patient, that we can talk about it. wish you all the best! warm regards, ute
ute-christin <ute-christin_nieschka@web.de>
Berlin, Germany Germany - Sunday, September 29, 2002 at 05:54:07 (CDT)

HELLO MY NAME IS MELISSA AND I WAS DIAGNOSED WITH PAPILLOMAS ON MY VOCAL CORDS AT THE AGE OF 2, AND I WAS BORN WITH THEM, MY FIRST SURGEREY WAS DONE AT 2 UNFORTUNATELY NOT DONE BY LASER. AFTER MY FIRST SURGEREY AT 2, MANY SURGEREIES FOLLOWED, NUMEROUS IN A MONTH JUST TO CLEAR THE BLOCKAGE I HAD INCURRED, I WENT INTO REMISSION AT THE AGE OF 11, AND THEN HAD ANOTHER SURGEREY AT THE AGE OF 16, I HAVE BEEN IN REMISSION NOW SINCE THAT LAST SURGEREY. I AM NOW 24 AND IT IS TIME FOR ANOTHER SURGEREY, I AM QUITE HOARSE AND RASPY AND FEELING SELF CONSCIOUS. I FOUND THIS WEBSITE FOR THE FIRST TIME AND WAS SHOCKED TO FIND OUT THAT THERE WERE OTHERS LIKE ME, SO AS I GET READY FOR SURGEREY #25 I WILL GO THERE WITH ALL OF YOU IN MIND.
MELISSA <LittleMelitta@aol.com>
HOOSETT, NH USA - Friday, September 27, 2002 at 15:15:58 (CDT)

HELLO, MY NAME IS MELISSA, AND I WAS DIAGNOSED WITH PAPILLOMAS ON MY VOCAL CORDS AT THE AGE OF 2, AND I WAS BORN WITH THEM, AT THE AGE OF 2 I HAD MY FIRST SURGEREY UNFORTUNATELY NOT DONE BY LASER, AFTER THAT FROM THAT SURGEREY ON I HAD A SURGERY EVERY MONTH TO CLEAN THEM OUT, BECAUSE OF THE BLOCKAGE I HAD INCURRED. SURGEREY AFTER SURGEREY UNTIL THE AGE OF 11 YEARS OLD, I WENT INTO REMISSION, UNTIL THE AGE OF 16, AND AT 16 HAD MY 24TH SURGEREY, I AM NOW 24, AND I CAN TELL THAT IT IS TIME FOR ANOTHER ONE, FOR OVER 20 YEARS I HAVE BEEN LIVING WITH THIS DISEASE, I DID NOT REALIZE HOW MANY OTHER SUFFERED FROM THIS ASWELL, SO AS I SOON GET READY FOR SURGEREY #25, I WILL BE THERE WITH ALL OF YOU IN MIND.
MELISSA <LittleMelitta@aol.com>
Hooksett, NH USA - Friday, September 27, 2002 at 15:04:50 (CDT)

HELLO, I WAS DIAGNOSED WITH PAPILLOMAS ON MY VOCAL CORDS AT THE AGE OF 2 YEARS OLD, I AM NOW 24 YEARS OLD,AND I HAVE HAD 30 SURGERIES, MOST OF THEM AS A TODDLER, WHICH BROKE MY MOTHER'S HEART. I AM NOW ON MY SECOND REMISSION , MY LAST SURGEREY WAS WHEN I WAS 16 YEARS OLD, AND I CAN FEEL THAT THEY ARE GROWING BACK--I JUST KNOW. MY FIRST SURGERY WAS DONE WITHOUT THE LASER, I AM GREATFUL FOR TECHNOLOGY.
Melissa Boelzner <LittleMelitta@aol.com>
Hooksett, NH USA - Friday, September 27, 2002 at 14:34:00 (CDT)

I am 57 yearsa old and was diagnosed with RRP in 1988. I have had 11 laser surgeries and am soon due for another. I'm really glad I stumbled upon this site today. I shall eagerly watch for new hope of a cure. In 1976 I had radiation therapy for cancer and lost my voice. I have always wondered if this was in some way the trigger that caused it.
Randy Williams <rw0147@bga.com>
Cedar Park, TX USA - Sunday, September 22, 2002 at 13:10:54 (CDT)

Hey there. I research home equity loans regarding mortgage financing headaches. Home equity loans work even if you have a second mortgage or no home equity . You can even do some debt consolidation too.
Stacey Wales
Mirtle Beach, SC US - Sunday, September 15, 2002 at 21:09:50 (CDT)

Mi spiace ma non so l'inglese. Ho 55 anni e sono affetta da papillomi laringei dall'età di 8 anni. Ho subito circa 200 interventi, ma negli ultimi anni qualcuno con risvolto drammatico: dopo un innesto di un frammento di costola per sostenere le corde vocali ormai sfiaccate, ho avuto un'emboli polmonare. A parte il fatto che sono senza voce, il mio più grande problema è il respiro per cui ogni due o tre mesi devo ricorrere ad un intervento. Potete darmi un consiglio? Ora sto facendo l'interferone che avevo già fatto qualche anno fa. Vi ringrazio e saluto cordialmente
neva ceglar <sagitario-ts@libero.it>
trieste, italy muggia - Sunday, September 15, 2002 at 12:11:14 (CDT)

Hello! Amy Catering San Diego California. Thank you for letting me sign your guestbook and thank you for your website. Glad you are here.
Amy
San Diego, CA US - Saturday, September 14, 2002 at 16:14:50 (CDT)

Hi Everybody. Wish I did your graphics. Great work. I found you at a free dating service site for adult personals believe it or not. One of the personal ads at the dating service referred to your site as a favorite. Amazing what you can find doing online dating huh? Email me if you want at beatrice_tran@hotmail.com.
Beatrice
Cleveland, Ohio US - Wednesday, September 11, 2002 at 12:58:54 (CDT)

Very nice site. I think I can spruce up the writing though. I write professionally and web content writing is part of what I do. I also write business letters and comedy . Feel free to visit my website.
Freelance Writer
Mission Hills, CA US - Thursday, September 05, 2002 at 11:31:39 (CDT)

Hello my name is Cisco. English language is my second language . I visit sites like yours to learn new english vocabulary words and improve my english grammar . I hope to have effective communication and business communication for a new job in US. I learned a new word of the day from your site. I plan to be public speaking and business writing better now from your site. Thank you.
Cisco
Bogota, Putumayo Colombia - Thursday, September 05, 2002 at 02:59:15 (CDT)

Hi! I was just passing through your site and thought I'd mention that I specialize in cheap international flights. If you international flights with low fares are something you are looking for, email me at cheap_flights@hotmail.com
cheap flights
Chicago, IL US - Wednesday, September 04, 2002 at 01:56:11 (CDT)

need to talk to people with bad side-effects from pegalated interferon and ribaverin
tony <trycup@hotmail.com>
vancouver ,b .c., - Monday, September 02, 2002 at 12:53:45 (CDT)

I am 69. Initial examination by an ENT indicates possible HPV lesions on my larynx. I find your site adds a new dimension to my research into the understanding of this disease.
Dean Reily <DeanReily@ieee.org>
Red Lion, PA USA - Sunday, August 11, 2002 at 04:53:01 (CDT)

Hi to you and your guests. My name is Jazz (Mom liked jazz music). I recently got into the web site promotion business. Are you interested in some online marketing help with your site. I do search engine optimization, keyword marketing research, and pay per click management. In short, internet advertising. If interested, email me at delgato2002@hotmail.com.
Internet Marketing
San Francisco, Ca US - Friday, July 26, 2002 at 11:17:23 (CDT)

My son was diagnosed with rrp when he was 9 and he is now 14. He has surgeries about every 3 months at Johns Hopkins. I saw some other posting from Marylanders and just wanted to mention that we receive wonderful care at Hopkins with Dr. Tunkel and the staff there. Good luck to all and God Bless!
Darlene <Gndsavage@aol.com>
Joppa, Md USA - Monday, July 22, 2002 at 18:06:35 (CDT)

My son Zachary is 6 1/2 years old and he has rrp.
Jessica & Zachary Aragon <jesaragon@aol.com>
West Covina, california usa - Saturday, July 20, 2002 at 01:18:11 (CDT)

A few days ago I realized that I didn't know much about RRP. It made me angry that I've had it for all my life and never knew much about it. The main reason for this is because I could never find a good resource or research about RRP. That is, until I found this website. Thank you for providing the information that you do.
Austin Palmer <austin@jiffypunk.com>
Lafayette, Louisiana USA - Wednesday, July 17, 2002 at 00:36:17 (CDT)

My daughter Mia was diagnosed at age 1yr.3mo. with RRP. She has had 14 surgeries from age 1yr. 3mo. to 5yrs. At the age of 5, her last surgery, the doctor decided to do reconstructive surgery on her next visit to the hospital, since she appeared to be in remission. So we did the reconstructive surgery and it was a success! My husband and I remembered her always saying she wished people could hear her and how she wished she could sing like her sister. Well after the surgery I wouldn't let her talk for the first three days so it could heal. So on the fourth day she asked if she could talk and I said "OK, but not alot and don't yell" And she went off talking softly. My husband came home and we jumped in the car to go to our favorite restraunt and on the way My husband and I were talking, the radio was on and my older daughter was singing as usual, but all of a sudden we heard a second voice. I turned to secretly get my husbands attention, but he had already noticed, so the both of us sat in the front crying quietly and happily drove past our favorite restraunt to hear the rest of the song being sung so beautifly by our two daughters. Mia has been in remission since, she is 9 1/2 now. She does have asthma also, but that doesn't stop her. She plays soccer and is one of the best, also karate in which she recieved 1st place in forms and sparring, and swimming she recieved many ribbons and awards. I am very proud of her and her accomplishments. I still fear the future of the unknown and possible reaccurance. I thank the Lord for today and I pray for the future, and we accept what the Lord brings, it is HIS plan and I trust in him.
Lesley Abraham <Abrahams@sbcglobal.net>
San Clemente, Ca usa - Monday, July 15, 2002 at 12:12:44 (CDT)

this is a wonderful information source...thank god there are people like you!
Adele Kern <juni123per@aol.com>
Bel Air, MD USA - Monday, July 08, 2002 at 11:56:27 (CDT)

i have a son of 9yrs old he has had this disease for five years, hes had fourty lots of lazer surgery, i have found here in GB there is`nt enough information , we areleft to find out things buy our self , i would just like to say thankyou for a wonderful site,over the years it has helped me understand alot more, carry on with the good work
sarah <sco14b4755@blueyonder.co.uk>
doncaster, yorkshire great britain - Monday, July 01, 2002 at 11:15:25 (CDT)

My daughter was diagnosed with RRP when she was four months old. She is now nine years old.She has had 150+ surgeries and has taken several medications to treat this disease. But thru it all, she has never given up. Neither will I. Good luck to everyone.
Demekia Nelson <Demekia_Nelson@Bellsouth.Net>
Roswell , GA USA - Thursday, June 27, 2002 at 14:52:24 (CDT)

I have a 15 year old daughter that has been diagnosed with RRP since she was 4 years old. She was living with her Father's family and was advised that she contracted it during birth. I have had several children since and none have had this condition and I have tested negative for HPV. What are other ways in which she could have contracted HPV ????
PJ <gidway@aol.com>
- Saturday, June 15, 2002 at 02:35:05 (CDT)

My son has had this condition since the age of 4,He has had over 90 operations, and remains in very good health. He has about 10% loss of voice due to scaring, but this dosn't seem to bother him. Thank you for providing further information about this condition.
Joanna Sontowski <joanna_sontowski@hotmail.com>
Aylesbury, Buckinghamshire United Kingdom - Friday, June 14, 2002 at 07:54:31 (CDT)

I was diagnosied with papiloma growth on my vocal cords when I was six years old. I am now 25 years old. My pediatrician sent me to a ENT at Shands hospital named Dr. George T. Singelton. At that time around the early 80's he was the only one in Florida who would preform the kind of surgery I needed. My parents took me to see Dr. Singelton when I was about 6 he then preform 19 surgerys on my vocal cords untill I was 12 years old when a miracle happened. During all these years my parents were told that I would never have more then 20 percent of my voice if I had any. They also told them it would be very likely I would have to have a tracheotomey the rest of life. Well the miracle happened at about 11 years old the growth just stoped but there was still alot of scare tissue they had to split so they split the scare tissue. Well the mircale was that after my last surgery to the amazement of the Dr. I had 80 percent of my voice back which was truly a miracle. I have no problems or reoccurances. I have not even seen an ENT after that. I thank God for the miracle he gave me and I thank Dr. Singelton for the gift he gave me because I am now teaching children with Autism Language skills that I would have never been able to teach before. My heart and my paryers go out to all that you may find the miracle I found.
Jennifer <naturesgift@care2.com>
Oviedo , FL United States - Tuesday, June 11, 2002 at 20:15:35 (CDT)

My niece is 2 years old, and is now going in for her second surgery. Our family does ot truly understand what is gong on, and it scares us. She is so little, and we love her.
Nancy <nancy@jpeterson.com>
Cedar Rapids, IA USA - Wednesday, May 22, 2002 at 06:32:54 (CDT)

Stumbled across you page via, your listed high in google. Cool Stuff!
Connery
Baltimore, MD USA - Saturday, May 18, 2002 at 13:16:54 (CDT)

I am a 34yr old mother of two. I had a biopsy done on March 19th and was diagnosed with RRP. I am going in for another surgery on May 14th. Up until this time I have been a healthy person. I'm very glad this website is here, as I don't think I got enough information from my dr. I'd be very glad to have someone email me with their experience and offer me some advice on how to deal with it all. Thank you, Angela
Angela <taaada1@netzero.net>
- Sunday, May 05, 2002 at 18:30:39 (CDT)

Hi Matt has had 42 surgerys to date he is now Six yrs old. He has been taking the Mumps vacine since Sept of 1999. He averages every two months. How can I help him with the stress, depression, fear and anger. Thanks Margie
Marjorie & Matthew Bearden <rabitchoker@msn.com>
Rapid City, South Dakota USA - Wednesday, April 24, 2002 at 23:22:21 (CDT)

i am a 44 yr old women who has dealt with this condition since i was a teenager... i am going on surgery 111 by this may 2002. please send me any info you may have on this disease, because it is very difficult for me to explain to my new boyfriend.
thank you very much, Regina
Regina Seelbach <reginaseelbach@aol.com>
memphis, tn usa - Thursday, April 18, 2002 at 15:56:31 (CDT)

I had no idea that this Website existed until my dr. told me of it today. I was first diagnosed when I was five and I am now 54 years old.
Sheryn Bennion <SHEBENNION@AOL.com>
Salt Lake City, Utah - Monday, April 15, 2002 at 21:14:08 (CDT)

Our 3 year old daughter was just diagnosed with LP on Friday (4/5/02). This web site has been a great help with finding info on this disease. I had never even heard of it until Friday. Thank you for helping and letting us know that we are not alone in this. I just pray that God will keep her from suffering from this like some children have. I would love to hear any advice, etc. from other parents who have been through this. Thank you.
Ami Cottrell <dougami@misn.com>
Steelville, Missouri USA - Wednesday, April 10, 2002 at 15:32:49 (CDT)

Our 13 year old son has just had his 3rd surgery on in vocal chords. He has RRP. We are very interested in learning about any treatments, research, etc. This is all new to us and we are very eager to learn all that we can. Blessing to all of you who have shared your touching and difficult stories.
Renee <mclaurin@carolina.net>
Laurinburg, NC USA - Tuesday, April 09, 2002 at 22:54:42 (CDT)

hi, i had a very serious accident at work and now the left side of my knee is full of scare tissue preventig me from straighting my leg out.what are my options for treatment? please help
gimppy <stopfam@surfglobal.net>
- Saturday, April 06, 2002 at 20:34:06 (CST)

Very interesting site... I was just diagnosed with RRP @ KU Medical Center in KC, KS. What a shock at age 30! I have had previous trouble breathing while doing heavy work but didn't think too much about it until I lost my voice in April of 2000. Due to lack of funds and no insurance, I put off seeking medical attention until I relocated to Kansas and found it very difficult to find work without a voice. After reading some of the other comments on this site I don't feel very optimistic about ever having a voice again. (very depressing) Thanks for making this site available.
Dan Walker <welder@workdiver.com>
Seattle, WA USA - Friday, April 05, 2002 at 23:35:41 (CST)

Hello, My 8 year old has JRRP.
She was Diagnosied with it April of 2002. She just had her 3 surgery yesterday 3/15.
Kirsten Cisco <Kirsty831@msn.com>
Medford, ny Usa - Saturday, March 16, 2002 at 07:35:19 (CST)

I'm 19 years old and has had this for 4 years with 17 operations. I feel this is a great foundation. keep up the good work
jenna rae burrus
lexington, kentucky usa - Thursday, March 14, 2002 at 15:20:38 (CST)

It has been about 1 1/2 years since I've been on the web page. I thought I would let you know my son Andre no longer has his tracheostomy, he has been on Cidofovir therapy for almost a year now, and he's gone from having surgery very 4 weeks to every 4-6 months. He is dong amazing considering all he's gone through.GOOD LUCK TO ALL TRYING SOMETHING TO STOP THIS TERRIBLE DISEASE.
Betty Marquez <gia15val@hotmail.com>
Visalia, CA USA - Wednesday, March 13, 2002 at 00:24:36 (CST)

Help Me, please
I am a student. I have laringeal papillomatosis. I have lost my voice for 1 year. I need yuor help. Here in Mexico City the doctors can not solve my problem. I am very desesperate
Omar Garcia Olascoaga <olascoagaomar@correoweb.com.mx>
Mexico City, DF Mexico - Friday, March 08, 2002 at 16:20:27 (CST)

i'm just looking for more/new info. on hpv in children. i'm trying to help my 3year old. i try to visit everyday just praying i'll find some amazing treatment or cure. any suggestions are greatly appreciated. thanks
cathy bradley <crazycathy77@aol.com>
irving, texas dallas - Sunday, March 03, 2002 at 21:07:06 (CST)

my daughter has hpv and has surgery every 3 months. i'm frantically surching for answers and help
cathy bradley <crazycathy77 @aol>
irving, tx dallas - Thursday, February 28, 2002 at 15:54:07 (CST)

My son was dignosed at 7 months of age when he nearly died of blocked airway. For the beggining months of his life i never heard him cry, i took him to so many doctors. They finally said he had blocked tear ducts ya right that was 2 days before he almost died. At childrens the only thing that saved him was a young intern who noticed his ribs turned out because of him breathing so hard. And that intern had read an article on RRP. That intern was my sons Guardian angel He called all the right docs and Khari was rushed to the emergency room for his first laser. My son is now going to be 7 in March. He has had over 100 surgeries we stopped counting. They told us when he was 3 that he wouldnt see is next Birthday, look at him keep going. I think the Doctors forget the Power of the Soul and what love can accomplish. I dont know what will happen tommorow but i have been blessed with the most amazing Son anyone could ask for i am grateful just wanted to share that with you.
Melissa Laraque <mellar0@hotmail.com>
Takoma Park, MD USA - Monday, February 25, 2002 at 22:09:25 (CST)

I am 44 years old and have been fighting this terrible disease for 8 years. I still do not fully understand what triggers it. I have had several surgeries over the years and after a while the papillomas were not my biggest enemy. The scar tissue from repeated laser surgery started to reduce the size of my airway. After several attempts to remove scar tissue without success I underwent a supraglottic laryngectomy. This process took out everything above my vocal chords. I had to learn how to swallow using several techniques given to me by a speech pathologist. I am still recovering and hope this nightmare will end soon. If you have similar problems please contact me with information. I would like to hear from anyone....Iwould like to add your name to my prayer list. May God bless each and everyone of you.
Terry Graham <mrt@2geton.net>
London, Ky. - Monday, February 25, 2002 at 08:21:42 (CST)

I'am 50 yrs. old and I have RRP. I'am interested in learning all I can about this disease.
Kathy Major <Kmjr@aol.com>
Grand Rapids, Michigan - Sunday, February 24, 2002 at 18:21:28 (CST)

Help,Help.Anyone with knowledge of this disease...Departament od childreen and family services are accusing me of SEXUAL abuse...My daughter has RRP...HELP HELP HELP I am praying with all my heart..and I know They will be answered....please anyone ...I need HELP!!!!!!!!!!!!!
Angie Ledford <cherokeeangiel@yahoo.com>
Young Harris, Ga USA - Monday, February 18, 2002 at 20:53:07 (CST)

2 cups of broccoli a day!! After reading about studies to determine whether nutritional therapy might decrease recurrence of papilloma growths, this 50yr old man with 11 surgeries in the past 14months had a new point of view about eatin' his veggies. Studies show a compound in broccoli induces certain hormones to be modified so they no longer promote growths. 'The jury is still out.' I will respond to all.....
gary berlin <gberlin1@home.net>
Scottsdale, AZ United States of America - Sunday, February 17, 2002 at 00:16:01 (CST)

I was diagnosed at the age of 10 and told I would grow out of it. I guess I haven't grown up yet because I'm now 38 and looking forward to surgery #44. I seem to be getting worse with time; they are spreading and my last several biopsies have been pre-cancer. The worst part . . . depression . . . it is so difficult and painful to talk that I withdraw from everyone and can't seem to get on top of my health problems. It seems to me that my immune system is exhausted from trying to fight. I am so relieved to find this group, I have been feeling very hopeless and alone with all of this. There is definitely strength in numbers, especially when it comes to prayer and searching for answers to a seemingly hopeless situation.
Michelle Westover <Talk2Michelle@juno.com>
Salt Lake City, Utah USA - Thursday, February 14, 2002 at 04:17:09 (CST)

I have had papillomas since I was 5 yr. old. Iwent into remission at 13-they cam back at 37-iwas fortunate to have that long with out them. I had my 60th survery on Feb.5,2002. I am now recovering from it.
victoria snavely <wgbytori@att.net>
Jasper, AL United States - Monday, February 11, 2002 at 05:29:01 (CST)

I have this disease, and on channel 12 on February 7, 2002, I had an interview with Pat Mastors. (In Rhode Island)
Casey Lynch <bladerkid77@worldnet.att.net>
Cranston, Rhode Island United States - Friday, February 08, 2002 at 14:27:31 (CST)

david howe <davidbhowe@yahoo.com>
clinton, ok usa - Wednesday, January 30, 2002 at 13:13:52 (CST)

my common-law has papaloma and i know how everyone of you feel,how you worry and stress about it,she was diagnosed with lung cancer 2 yrs ago from this disorder and not one day goes by that i don't wish it wasn't her,like most of you she got it when she was 7 and she is now 36,she goes for laser surgery every 3 months but that doesn't keep the growths away for too long.I just want to say that i pray for all of you and wish you the best in your years to come.
angela roberts <indianchic22@yahoo.com>
prince albert, saskatchewan canada - Tuesday, January 22, 2002 at 11:50:38 (CST)

Laken Palmer is my grandchild. I have gone through much of this trauma with her and her Mom. My job prevents me from continuing to join her in Denver...but I have added her to every prayer list in the surrounding area. She is the most precious child I know and we hope to see continued improvements in her. My thanks go out to Dr. Jerome Thompson and to Dr. Nigel Pashley.
Carole Scoggins <scoginscm@cs.com>
Memphis, TN USA - Wednesday, January 16, 2002 at 06:40:34 (CST)

I KNOW LAKEN PALMER AND HER MOTHER ASHLEY VERY WELL AND I HAVE TO SAY THANK THE GOOD LORD FOR SENDING HER TO DR. N.PASHLEY,I HAVE MET HIM AND ASKED QUESTIONS OF MY OWN JUST AS A FRIEND OF ASHLEYS AND HE HAS ALWAYS BEEN OPEN AND TRUTHFUL AND TALKED SO I KNEW WHAT WAS GOING ON. THANK YOU DR PASHLEY AND DR BINDING AS WELL.RENA RAGINS(THE CRY BABY)HAHA!! SEE YA
RENA RAGINS <renar@bootheel.net>
BRAGG CITY, MO 63827 USA - Wednesday, January 16, 2002 at 02:45:26 (CST)

My daughter, Laken Palmer was diagnosed with rrp at 10 mo,we lost her father in a car accident when she was 18 mo, she was trached on her 2nd birthday because the scar tissue webbed across her airway after having surgery every 7-10 days for 13 months.At the age of 3, I was giving her daily injections of interferon.At 4 years we added I3C and were still doing the interferon, but nothing was helping. At 5 years old, Laken's CT scan showed there were several masses of papilloma in one of her lungs, she was given 2 years to live.Laken was 7 years old when I was told there wasn't much time left for her, and that is when I decided on Dr. Nigel Pashley in Denver,Colorodo and his Mumps vaccine treatments.Since October 1999,Laken has had 2 airway reconstuctions with a rib graft and 20 laser surgeries being injected each time with the mumps vax. And we stopped all other drugs, interferon and I3C. Laken is now 9 years old and she is still hanging in there. She gives us all hope. Anyone who needs to talk please e-mail me, it is very srtessful,I know after going through this alone with her for 8 years.
Ashley Palmer <anicolepalmer@hotmail.com>
Caruthersville, Missouri US - Monday, January 14, 2002 at 00:10:24 (CST)

its me agin,somethings i forgot,my 10 year old son Jeremy,has had to have a tracheotomey..that was placed at the age of 4,due to all the emergenices from the rapied growth,he would just stop breathing..he still has the trach.he has a web,scaring every where,and barley has a vocie;theres nothing but a wissper..hope everyone dosent have to go through that.god bless all..
tammy chadwick <tamrascoobydoo@aol.com>
colton, california united states - Thursday, December 20, 2001 at 10:27:45 (CST)

hi,my son was diagnosed with rrp at the age of 10mon.he is now ten years old,and has had well over 300 surgerys..i would love to talk with any other parents who like some infurmation,or whoe thinks they might have information to give me.or anyone who just need to talk!!!!im am 28 with 4 kids so i know how hard this is to deal with..
tammy chadwick <tamrascoobydoo@aol.com>
colton, california united states - Thursday, December 20, 2001 at 10:18:48 (CST)

Hello my name is Barbara I was diagnosis with Papillloma growth when I was 5 Yrs old.
I am now 35, I have had over and 180 operations on my vocal cords. And I now have a web, scare tissue, but I do have good news I have not had any operation since 01/01/1998. I was in to see my doctor last month, had an x-ray the works you know, I have a few on my vocal but not enough for surgery. For all of you out there hang in there . And I just want to thank Marlene and Bill Stern for getting the word out and getting people like my self and the rest of us a second chance with the studies. Again Thank You , Love ,Barbara Morris
Barbara A Morris <Mbarbara@aol.com>
Hyattsville, Maryland Prince Georges - Friday, December 14, 2001 at 20:51:24 (CST)

Hello my name is Barbara I was diagnosis with Papillloma growth when I was 5 Yrs old.
And I would like to thank Marlene and Bill Stern for the wonderful work that they have done for people like my self and others.
Barbara A Morris <Mbarbara@aol.com>
Hyattsville, Maryland Prince Georges - Friday, December 14, 2001 at 20:39:22 (CST)

I am 31 yrs old. I was dianosed when I was 22. I have had 10 surgeries. I went to the doctor in October of 2001, and it was not back. It has been 1 year since my last surgery (10/16/00), and that is a big relief. I love the news letters. They are very informative. Thanks for all your work!!
robin george gwin <prgwin@bellsouth.net>
lawrenceville, ga us - Tuesday, December 11, 2001 at 23:48:35 (CST)

Our son, Jonathan was diagnosed with RRP when he was six years old, he's had nine surgeries and it's been a year since he's last one, he is now almost ten and thanks to God his ENT feel he's almost close to saying that he's in remission. We pray to God that it is so!
SORIS & JUAN GARCIA <ILEANAGIRL@AOL.COM>
HOLLYWOOD, FLORIDA USA - Friday, November 30, 2001 at 22:01:41 (CST)

OUR 2YOA SON WAS JUST DIAGNOSED WITH RRP
KELVIN AND GAYLA TYNES <KGLTYNES@AOL.COM>
MIAMI, FL USA - Thursday, November 29, 2001 at 16:01:25 (CST)

I have a 9 year old stepson that has rrp. He has been through well over 150 surgeries.
Tabatha Elrod <tabatha1213@aol.com>
Kokomo, In. United States - Wednesday, November 21, 2001 at 10:10:32 (CST)

I am interested in talking to other parents who have young children in my area who have been diagnosed with lp or rrp. E-mail me
Concerned Mom <leaptm@aol.com>
Chattanooga, TN - Wednesday, November 14, 2001 at 00:29:17 (CST)

Been here before, just needed to change my e-mail address. I have missed bieng informed!
Lisa Wiley <wileys96@home.com>
aliso Viejo, CA USA - Sunday, November 11, 2001 at 21:13:13 (CST)

I noticed something on my tonsils and went to a specialist. He told me it was a Pappiloma Wart, but didn't explain more. Should I be concerned and should it be removed? Thank you for anyone's response.
Gina <genes639@msn.com>
- Tuesday, November 06, 2001 at 22:28:38 (CST)

I'd like to know more about the success rate of using Indolplex(TM) with this cindition. It is available in Aust. Could you compare its success with Metagenics I-3C? (Also now available).
Many thanks,
Andrew Whitfield-Cook RN.
Andrew Whitfield-Cook RN <whitfieldcook@ozemail.com.au>
ELANORA, QLD AUSTRALIA - Monday, October 22, 2001 at 14:52:49 (CDT)

Hi,
I have had Viral papilomas in my vocal chords since the age of seven and have had 4 surgeries with a gap of 4 years between each occurance. I am 26 years now and I just had my 4th surgery last month and would like to know more about the disease. Also I have 2year old twins and am concerned will this be passed on them too.
Thanks in advance for your help.

Srivi Sridhar <srivijagan@yahoo.com>
woodbridge, NJ usa - Sunday, October 07, 2001 at 19:15:22 (CDT)

My prayers are with you all. I count my blessings that I have not encountered a terrible disease such as this I believe in the power of prayer. God Bless you all I bow my head. Debi
Debra Cussner <dcussner@aol.com>
Cushing, Oklahoma USA - Monday, September 10, 2001 at 21:59:29 (CDT)

I am a mother of a 3yr old, that just had her 2nd surgery on Friday morning. This is very new to me and although her surgean is good at what he does, he is not providing me with any answers. My heart goes out to any one with this disease/virus. My heart goes out even further to mothers of little children. When my daughter first got this virus I thought it would go away, my furstration grew as I could no longer hear what my Sweet Angel was trying to say. Please any one feel free to contact me to share info., or to just have a friend that understands. GOD BLESS!!!!
Olivia Jackson <dajtyre@hotmail.com>
Miami, Fl USA - Saturday, September 08, 2001 at 19:57:41 (CDT)

Im 23 years old and i have had RRP for 16 years now. Last week I had my 50th surgery since they discovered it when i was 7 yrs old. I started the Cidofovir earlier this year and im still hoping that it will put it in remission. I dont wish this upon anyone so with that my prayers go out to anyone dealing with this be it a family member or the person itself. Feel free to email me with questions or just to talk to me about this. Just remember dont give up hope or faith and to be strong with this.
Jessica <Whisperj23@aol.com>
Iowa City, Iowa US - Saturday, September 01, 2001 at 01:43:31 (CDT)

I am looking for information on voice therapies for children with rrp.
A. Wood <abwood@worldnet.att.net>
- Friday, August 31, 2001 at 12:04:56 (CDT)

I was diagnosed finally with RRP on Friday August 24th on my third surgery since april 99. This surgery was done by Dr. Robert Ossoff in Nashville, TN. at Vanderbuilt. Vanderbuilt is a teaching hospital and Dr. Ossoff is teaching new interns about RRP. He has voiced a concern that we the rrp community need to be more public about our disease so we can get money for research. Since I have just been diagnosed for sure all I cn say is that I am reading as much material as I can get my hands on and I would like to help all the people out there diagnosed with rrp in any way I can. My heart bleeds for all but even more for the children diagnosed with this disease. If I can help in any way. I would like to.
Teresa Welborn <Blueindy948@aol.com>
Indpls, IN USA - Sunday, August 26, 2001 at 20:04:02 (CDT)

This is a very good and informative website. Thank you for having it.
Pat Pate <sissipat@aol.com>
Collierville, Tn. U.S. - Friday, August 24, 2001 at 20:55:43 (CDT)

I am an Ear nose and throat speciallist concerned in RRP, studying new alternatives in its treatment. Thanks.
Olga Beltran R.C. <olberoca@hotmail.com>
Distrito Federal, MEXICO - Tuesday, August 21, 2001 at 22:13:33 (CDT)

Nice site...
backgrounds <tougefr@starwarsave.com>
USA - Wednesday, August 15, 2001 at 19:05:44 (CDT)

My husband has rrp, this is a great web site
patricia patrick
- Tuesday, August 07, 2001 at 11:16:27 (CDT)

Interested in speaking with others who have babies/young children with RRP especially in the state of NC and surrounding areas.
Tamara <tamvan@twave.net>
- Saturday, July 21, 2001 at 07:34:55 (CDT)

My three year old son was diagnosed with rrp in Janurary.He is going in for his 3rd surgery in August.Any advice would be greatly appreciated.
Michelle McLin <jmclin@kaplantel.net>
Kaplan , Louisiana USA - Tuesday, July 10, 2001 at 16:52:44 (CDT)

I have had papalomatosis for 5 years now! I have just turned 18 and have had 17 surgeries. I must admit I am losing hope. If I'm lucky this will take me soon. But for the rest of you good luck may you all see true happiness in the midst of pain.
Becky Evans <becky@hotmail.com>
Emmett, Idaho usa - Sunday, July 01, 2001 at 21:54:22 (CDT)

My daughter will be 3 years old on July 8. She is on her way to her 7 surgery, and the doctors would like me to consider medication. I've decided to search for alternative treatments, natural ones. Something to boost her immune system. If anyone has any suggestions, please, help us.
Heather Fischer <mf55516@alltel.net>
Lincoln, NE U.S.A. - Friday, June 29, 2001 at 22:33:11 (CDT)

We have a young child of 6 who has this laringeal papiloma virus and are upset at the thought of him having them removed every few months do you know of any support groups in the uk
Jean KOLAT <jean.kolat@ntlworld.com>
huddersfield, yorkshire england - Sunday, June 24, 2001 at 15:29:26 (CDT)

I have papillomas for 28 years. Nothing is working.
Boguslaw Talaga <btalaga1@home.com>
Chicago, Illinois - Friday, June 22, 2001 at 13:06:30 (CDT)

Hi, I'm 30 years old, and since I was 2 y. o. I had over 250 surgeries to remove papillomas from my vocal cords and around them. Now my left vocal cord is half size and there is lots of scaring on, and around them. My doctors try everything from laser ,fat injection, scar removal to interferon. Nothing is working. Papillomas are still groving and my voice is getting worse. Anybody knows about anything else, contact me. BOB
Boguslaw Talaga <btalaga1@home.com>
Chicago, Illinois USA - Friday, June 22, 2001 at 12:52:47 (CDT)

Hi, I'm 30 years old, and since I was 2 y. o. I had over 250surgeries to remove papillomas from my vocal cords and around them. Now my left vocal cord is falf size and there is lots of scaring on and around them. My doctors try everything from laser ,fat injection, scarremoval to interferon. Nothing is working.Papillomas are still groving and my voice is getting worse. Anybody knows about anything else, contact me. BOB
Boguslaw Talaga <btalaga1@home.com>
Chicago, Illinois USA - Friday, June 22, 2001 at 12:34:35 (CDT)

I would like to recieve information about Pulminary Hyper Tension,"what it is and treatment"
Carolyn Kinsler <ckinspap@geetel.net>
Frankfort, In USA - Wednesday, June 20, 2001 at 16:53:37 (CDT)

I am a friend of a person with RRP and I am looking for all the information I can get.
Rebecca Viewegh <RViewegh@Indygov.org>
Indianapolis, IN USA - Friday, June 08, 2001 at 07:39:47 (CDT)

I'm 37 with 9 surgical removals for RRP. I am now thinking of trying DIM to see if it will reduce the RRP.
Andrew Johnson <medic149@nycap.rr.com>
Niskayuna, New York USA - Saturday, June 02, 2001 at 21:48:00 (CDT)

I am 45 years old and have had 3 surguries for removing papillomas. My ENT tells me of a promising new treatment he read about using Photodynamic Therapy. It's highly experimental on papillomas and not FDA approved yet but the initial results are very promising. For more information, search the internet for Photodynamic therapy and papilloma. Good luck,good hope, and good therapy for all. Mark.
Mark Handmacher <tanyourcan@aol.com>
San Diego, Ca USA - Wednesday, May 23, 2001 at 11:23:14 (CDT)

My daughter Kaylin had her fifth surgery last Monday and will begin Interferon injections in the following week. I would appreciate a letter from anyone who has had prior experience with the medicine. Thank you. Sean
Sean Riebli <jenkandsean@yahoo.com>
Vallejo, CA USA - Monday, May 21, 2001 at 00:45:19 (CDT)

My daughter has been struggling with RRP since 18 months old. She is now 20 years old with a 14 month old daughter. She has tried all the treatments that are available and most have been somewhat successful, but nothing was the miracle we were looking for. She has had hundreds of surgeries and Thursday masses in her lungs were biopsied and identified as pappiloma. Please let me know if there are any treatment options for the disease that has progressed this far. I am desperate and don't know where to turn.
Verna Elliott <vernaelliott@yahoo.com>
Lawrenceburg, Tennessee - Friday, May 18, 2001 at 21:52:23 (CDT)

Hi! I am 14 years old, and I have had pappiloma for 12 years! I have had some 50-60 surgeries. This website is really great! I wish everyone the best of luck!
Carrie <Carriecarl@aol.com>
Sherwood, AR US - Saturday, May 12, 2001 at 13:22:12 (CDT)

My son Coty was diagnosed with this virus at age 18 months old. I had always tried to do research on this, but could never be of much success. Even after time and time again asking each doctor if there was any other proceedure or anything on this disease. No one has EVER directed me to any foundations, organizations or anything at all. I had no idea of such. Everyone around here acts as if it is a very rare disease and have no information on this. I found Dr. Nigel Pashley by accident when I noticed the front page of the Commercial Appeal. I could not believe what I read and especially about the 75,000 people that have died. I freaked and started looking for this doctor. Now I found him and this great site. Maybe I can start getting somewhere now. We will be going to Denver to see Dr. Pashley in early June.
Lynnette Pate <P8pics@aol.com>
Memphis, TN US - Thursday, May 03, 2001 at 22:15:05 (CDT)

My granddaughter was just diagnosed with RRP. I've been an obstetrical nurse for 27 years and never knew such a disease even existed. It is imperative that we get the Academy of Obstetrics and Gynecology to recommend that all obtetricians council their patients with HPV on the risks of possibly passing the virus unto their infants through vaginal deliveries. I know thatmy daughter would have opted to have an elective section if she knew there was even the remotest chance of passing on the virus to her infant. Apparently ACOG made the decision for us to assume the risk. Needless to say I'm angry.
Donna Traina <sinacur@aol.com>
Riverhead , N.Y. - Monday, April 30, 2001 at 18:40:07 (CDT)

We have a 3 year old girl with lp who has required three surgeries in the past six months. She is not currently taking any medicine and we are desperately trying to discover alternative treatments. We would appreciate any and all comments, information and advice that anyone could offer.
Sean Riebli <jenkandsean@yahoo.com>
vallejo, ca usa - Saturday, April 28, 2001 at 22:59:19 (CDT)

mY SON HAS HAD PAPILOMA OF THE LARNYX FOR 30 YEARS, PLEASE HELP
nATALIE dOYLE <NDOYLE@FDIC.GOV.>
WOODRIDGE, iLLINOIS - Monday, April 23, 2001 at 13:28:57 (CDT)

I guess its nice to know you're not alone with this kind of illness - although I wouldn't wish it on anyone. I've had eight suregeries and number 9 is scheduled. I will be starting I3C after this one.
Ron Colonna <roncolonna@aol.com>
Springfield, Ma. 01118 - Monday, April 23, 2001 at 10:08:18 (CDT)

great site.i just had laser surgery this morning.doctor told me it was pretty bad this time.1st operation in 1957 at the mass eye and ear hospital in boston.I had well over 50 operations btwn the ages of 2 and 13.wore a trach the whole time.virus went dormant btwn ages 14 and 30 when it re-occured.ive been having laser removal surgery every 1 to 2 yrs for the past 15yrs.I would very much like to get into a study program somewhere in the usa.Travel is not a problem,I work for a major airline here in the dfw area.Great site...i know where my united way contribution will be going...
MARK LAWNICKI <gail2lawn@aol.com>
FT WORTH, TX USA - Monday, April 02, 2001 at 19:50:46 (CDT)

I have had five surgeries and have just now heard of your
organization from a member who is a friend of mine
Frank Seif <fseif@bookmans.com>
Tucson, AZ USA - Monday, March 12, 2001 at 09:59:45 (CST)

My granddaughter, Rachel, age 2 was diagnosed with RRP March 8,2001. I had never heard of this virus and want to educate myself. Thank you for this site. It has helped.
Cynthia Curtis <cynful79245@yahoo.com>
Breckenridge, TX USA - Friday, March 09, 2001 at 06:05:43 (CST)

My prayers are with all who are faced with the challenges of rrp.
jason r jacobs <kroonjacobs7@aol.com>
Tijeras, NM USA - Wednesday, March 07, 2001 at 23:11:47 (CST)

I was diagnosed with RRP a few months ago at the age of 65. After 3 surguries I am going to begin I3C. Can anyone tell me if this is better/the same as DIM as a beginning treatment. I shall discuss it with my doctor next week for post-op, but she was unaware of any treatment other than interferon. I suggested she go to the RRP web site.
Grace Knudson <grabob@zianet.com>
Deming, New Mexico United States - Sunday, February 18, 2001 at 16:35:52 (CST)

My four year old son has respiratory papillomatosis and has had two surgeries. He is about due to go in again but our insurance has changed and I am having trouble getting back to his doctor. It is very discouraging that not only does he need the surgery but he will also be faced with changing hospitals and doctors. It is hard to find doctors who you are comfortable with and I really hate to have to change when we are so happy with his doctor.
Denise Manso <DCMathome@msn.com>
Oak Forest, IL - Tuesday, February 13, 2001 at 17:31:10 (CST)

My 2-year old son was just diagnosed with RRP.I would appreciate any info. or suggestions anyone may have.
Michelle McLin <jmclin@kaplantel.net>
kaplan, La US - Tuesday, February 13, 2001 at 16:29:03 (CST)

OUR CHURCH LABANGHAL ALLIANCE CHURCH HERE IN GENERAL SANTOS SOUTHERN MINDANAO NEEDS FINANCIAL SUPPORT FOR OUR OUTREACH PROGRAM FOR OUR INDIGENT MEMBERS AND ALSO FOR OUR CHURCH NEEDS.
WE ARE A BIG ORGANIZATION BUT WE LACK FUNDING FOR OUR MEMBERS WHO LIVES BELOW POVERTY LINE, FOR OUR CHURCH EXPANSION AND OUR PASTOR FINANCIAL NEEDS. WE ARE SOLELY DEPENDENT ON OUR MEMBERS INCOME EVERY SUNDAY TO THINK ALL MEMBERS ARE ALSO NEEDS FINANCIAL SUPPORT.
PRESENTLY, OUR CHURCH BUILDING CONSTRUCTION IS STILL GOING ON BUT DUE TO FINANCIAL INCAPACITY IT HINDERS US TO CONTINUE CONSTRUCTING. WE STILL BELIEVE GOD WILL STILL SUPPLY THE NEEDS. WE HOPE AND PRAY YOU HAVE A KIND HEART TO HELP US BY EXTENDING YOUR FINANCIAL SUPPORT. MAYBE YOU ARE GOD'S ONE OF THE CHOOSEN FEW TO HELP US IN THIS NEEDS. GOD BLESS

JUDITH RACINES
ONYX NERIO
025 MACOPA ST., GENERAL SANTOS CITY
MINDANAO PHILIPPINES
judith racines <katakana2k@yahoo.com>
general santos, mindanao philippines - Monday, February 12, 2001 at 01:25:37 (CST)

I'm 45 and have had RRP since birth. I now have cavitary lesions in my lungs after years of laser surgery, the last 6 years using a jet ventilator. I'm anxious to hear about similar experiences. I have surgery every 6 months, I've had well over 200 surgeries, I had a trach for 9 years as a child.
Sherry Osinga <wereoutthere@msn.com>
Tucson, AZ USA - Friday, February 09, 2001 at 22:04:03 (CST)

i am 5 years ol and have had rrp since the age of 2. Ihave had 14 operations so far with plenty more to come as the pappilomas are very aggresive at the moment i am hoping to try interferon in the near future and i hope this will help me, i have not been able to talk in more than a whisper for more than a year now it is very fustrating for me....
Alexandra Allen <debbie_emm@hotmail.com>
Blackburn, Lancashire - Thursday, February 01, 2001 at 16:23:26 (CST)

My daughter suffered from laryngeal pappilomatosis from the time she was born till she was four.She went for a number of surgeries at" Sick Kids".My daughter also had to get daily injections of "Interferon" to help slow the rapid growth down.Today she is totally healed Thank God.I still to this day do not know what causes it.For some reason my family believes that because she had this illness since birth,maybe I gave it to her. I need to know what exactly what this illness is and what causes it.If anyone could help me by emailing me with info. regarding this matter I would greatly appreciate it.I tried asking the doctor what causes this but he told me anumber of things could cause it,not really giving me a substantial answer on it.If anyone has any info. on this ,please email me at xndrex@hotmail.com Thankyou,you will be helping me greatly.My main question is ;can this be passed from mother to child?what causes it and what is it really? Please help.
ANDREA <XNDREX@HOTMAIL.COM>
NIAGARA FALLS, CANADA - Monday, January 29, 2001 at 17:42:53 (CST)

my pass word will not work for me to chat.I am very bothered that you would close this web site that helps so many of us thru this ordeal.It would be a shame to end it now after all the work and help you have been and done.please rethink your dicision.thanks again val michael
val michael <leezer200@aol.com>
des moines , ia usa - Wednesday, January 24, 2001 at 05:38:53 (CST)

I was diagnosed with Juvenile laryngeal papillomatosis at about 8 months old. I am now 20 years old. I have had 53 lazer surgeries and am about to schedule another.
Jillian Adee <Jeighdy@msn.com>
Everett, - Monday, January 22, 2001 at 21:53:39 (CST)

I have had this virus for the past nine years i have laser surgery every 2 months. my doctor is injecting interferon directly in to the papillomas. I would like more information to get rid of this virus . And to know if it is contagious. Im 20 years old

Kelly Belt <lilgeniegirl20@yahoo.com>
onawa, Ia usa - Monday, January 22, 2001 at 18:18:45 (CST)

I have had this virus for the past nine years i have laser surgery every 2 months. my doctor is injeting interferon directly in to the papillomas. I would like more information to get rid of this virus . And to know if it is contagious

Kelly Belt <lilgeniegirl20@yahoo.com>
onawa, Ia usa - Monday, January 22, 2001 at 18:12:26 (CST)

Recently diagnosed with RRP. Looking forward to more information about the condition. Thanks.
Wes <thompwe@yahoo.com>
New York, NY - Sunday, January 21, 2001 at 23:03:29 (CST)

hello....my son, Cole, was diagnosed a year ago. This is not easy, but not much in life is. "Hang in there-it gets easier", they tell me and now I'm passing it along to you. feel free to email me.
Ande Woolworth <_thrillseeker@excite.com>
saginaw, michigan usa - Thursday, January 18, 2001 at 14:20:11 (CST)

i would like to here from anyone who could let me know if papillomas can come back after being in remission.as i have a 7yr old boy who has had papillomas since he was 4 yrs old and has had 30 lots of lazer treatment, and has been in remission for 8 months, I NEED TO KNOW ,
sarah <scys 1110@cablenet.co.uk>
yorkshire, uk - Monday, January 15, 2001 at 08:47:48 (CST)

I have taken great comfort from all the information I could view at this site.Currently suffering from RRP.
Colm Doyle <Colm.doyle@MKG.com>
Dublin, Ireland - Tuesday, January 09, 2001 at 10:51:52 (CST)

My daughter was diagnosed with juvenile laryngeal papilloma when she was 2 years old she is 7 now. She has went through 58 surgerys. Me and my husband really dont know much about this virus. Her doctor has told us that the only thing available is to have the laser surgery. We have also been told that the virus should go away but there has been no luck. If there is anyone who knows any other medications or therapies that are available PLEASE contact me. This past surgery has left our daughter only being able to whisper and is causing alot of problems in school. After looking over this site i have read alot of stories about rrp i really had no idea there were so many out there. Any information would be grately appreciated
Angie <angie99_26651@yahoo.com>
Summersville, WV - Monday, January 08, 2001 at 22:28:19 (CST)

I was diagnosed with adult onset RRP 9 years ago (I'm 41)and even though I'm in remission I would like to receive the newsletter
Miguel Cortes <miguel.cortes@bolnet.com.co>
Bogota, Colombia - Friday, January 05, 2001 at 17:19:51 (CST)

Our daughter was diagnosed with papillomas just before her 2nd birthday. Her case is considered aggressive due to their rapid return. She is four now and has had 18 surgeries to date. She has been lucky to be a part of a study locally that combines the laser excision of these papillomas with the use of Cidofovir, and anti viral that has shown some very positive results.
Kristi Bugge <kbugge@bigfoot.com>
Portland, Oregon USA - Friday, January 05, 2001 at 13:28:17 (CST)

I HAVE A 5 YEAR OLD (SHANTELL)WITH RRP 14 SURGERIES, DIAGNOSED AT TWO. I BELIEVE IN THE HEALING POWER OF THE LORD AND I WANT ALL OF THE RRP COMMUNITY TO PLEASE PRAY THAT THE LORD WILL REVEAL THE CURE TO SOMEBODY. PRAY FOR ONE ANOTHER THAT YOU MAY BE HEALED. BECAUSE BY HIS STRIPES WE ARE HEALED. AND NO WEAPON FORMED AGAINST THEE SHALL PROPER! PRAISE GOD SAINTS AND KEEP YOUR HEAD UP! WITH LOVE AND SUPPORT TO ALL, ANYTIME. AND GOD BLESS YOU AND YOUR SWEET FAMILY
AMANDA RICE <HISBLOODMYSIN@AOL.COM>
FRANKLIN, GEORGIA USA - Saturday, December 16, 2000 at 16:51:37 (CST)

We were just told our son Brandyn age 8,has RRP on 12/12/00..this site has helped us to understand more of what we can expect and that treatments are available!!!!
He is to have laser surgery after the Holidays..if anyone has more information please let us know...
Sincerly,Edward and Tracy Brown
Eward and Tracy Brown <ebrown@norden1.com>
walbridge, ohio usa - Wednesday, December 13, 2000 at 20:56:41 (CST)

Thanks to Bill and Marlene Stern, and to all those who have contributed their knowledge, input and support. I know little about this disease other than what I have read, though there is a remote possibility I may have contracted it, by having imtimate contact with a woman I love dearly. Marlene. Thank you for the referral to your site, again, it NOW has significant meaning in my life...and hopefully I can share it with you know who!

Phil Hunolt <Phunolt@aol.com>
Winston-Salem, NC USA - Monday, December 11, 2000 at 19:14:19 (CST)

we are new to this info and
would like to learn more
dustin dillard <spradleyneenee@aol.com>
crowley, texas us - Friday, December 08, 2000 at 22:47:51 (CST)

I am Acting Chief of the HPV Section in the Centers for Disease Control and Prevention.
Elizabeth R. Unger <eru0@cdc.gov>
Atlanta, GA USA - Tuesday, December 05, 2000 at 10:47:33 (CST)

My son Julio was diagnosed with HPV when he was 1yr 8mths. old. He will be 4 on March 2nd and has had a total of 13 surgeries.His last surgery was in the month of Oct.'99. He has been taking Indolplex (chocolate sprinkles) for a little over a year. Thank GOD that he has not shown any symptoms since his last surgery. He is responding well with the Indol. I have alot of faith in GOD that he will keep my son well. Good luck to all other families and children suffering with this awful disease.Know that God is with us all and GOD bless.Also, a thanks to Bill Stern who returned my phone call a year ago when I thought I was alone with my child and this disease.He opened my eyes to several options my son's doctors weren't giving me. Thanks.
Christina Gonzalez <babygirlx187@aol.com>
San Francisco, California USA - Sunday, December 03, 2000 at 19:00:01 (CST)

My s 3 year old son has Laryngeal Papilloma. We found out Oct. 26 when he had his first surgery and he is going in surgery again Dec. 5.
Christina Davis <christinadavis3@hotmail.com>
Kapolei, Hawaii USA - Saturday, December 02, 2000 at 16:37:59 (CST)

I'am 49 years old and have had two surgeries and now RRP has returned. I would like more information regarding an anti-viral injection (experimental). I have been to the U.of M.Vocal Chord Clinic and they informed me that the virus has returned.
Kathy Major <Mjr2770@aol.com>
Grand Rapids, Michigan U.S.A. - Thursday, November 30, 2000 at 19:36:26 (CST)

Have had this for almost two years, two surgeries and need additional surgery due to hoarseness and quality is not good.
Kathy Major <Mjr2770@aol.com>
Grand Rapids, Michigan U.S.A. - Thursday, November 30, 2000 at 19:22:36 (CST)

My son Jonathan was diagnosed with Laynix Papillomas when he was six years old he will be nine years old next month. So far he's had seven surgeries. The last one being June '99, so I'm hoping this means he's in remission but it's to soon to tell, he is still getting his three months checkup with his ENT doctor. This hasn't been easy on him but he's a fighter and we have faith in God that soon there will be a cure for this disease that has changed our lives. Thanks
Soris Garcia for Jonathan Garcia <Ileanagirl@AOL.com>
Hollywood, Florida US - Saturday, November 25, 2000 at 21:13:46 (CST)

We are thankful for this website.
Michelle Pritchard <jads@globaleyes.net>
Carbondale, IL. USA - Friday, November 24, 2000 at 21:53:53 (CST)

I found out about HPV not so long ago because I had an abnormal paps. I feel kind of confuse do to the fact that it says "it might not go away" Would I be able to have any kind of sexual contact with my partner wiht aout using a condom?
Janette <bterrones@yahoo.com>
Whittier, CA US - Monday, November 20, 2000 at 13:03:09 (CST)

I'd like to take this opportunity to thank the Stern's. They gave hope and knowledge to all who needed to learn about this disease. Our daughter Annie, had about 15 operations during a three year period. She's been in remission for about 6 years and is currently 12 years old. We had her on I3C for about 2 years with no obvious improvement. Over time we we became less diligent in giving Annie the I3C. About 2 months later she went into remission. I thought some of you would like to know that miracles happen. Again, thanks Bill and Marlene!
Ken DenBesten <kddb1@aol.com>
Murfreesboro, TN - Tuesday, November 14, 2000 at 20:27:33 (CST)

This is a very informative site. Thanks for taking the time to put it up. My son has had his tenth surgery and is scheduled for his eleventh on December 20th. We are very interested in your information on the cidofovir treatments.
Dallas Astler <DALLASASTLER@PRODIGY.NET>
Garland, Texas USA - Wednesday, November 08, 2000 at 20:40:43 (CST)

My son was diagnosed with papiloma over a year ago,
I am glad they have a web page now about this where I
can go to and look for info. I never knew this existed until
a year ago. My family is dealing with this the best way we
know how.
Today is my Nathan's 5 surgery and he is doing fine.
DAMIAN THOMAS
COLLINGDALE, PA - Monday, November 06, 2000 at 12:04:14 (CST)

Persistant swelling of vocal cords since last surgery in May of 2000. Currently in speech therapy to help produce voice.
Tamara <adamntam@aol.com>
El Cajon, Ca USA - Tuesday, October 24, 2000 at 19:15:14 (CDT)

My mother has been diagnosed with primary pulminary hyper tension, she has been in an induced coma for almost 1 month. Would like more info..doctor's say its very rare...help
laura <borriqua20@yahoo.com>
nyc, ny - Saturday, October 21, 2000 at 13:26:47 (CDT)

I have had RRP since 1994 and am going in for a check up on Monday. Hopefully all is well!
Lisa Wiley <Wileys96@earthlink.net>
Aliso Viejo, CA USA - Sunday, October 15, 2000 at 20:20:01 (CDT)

Husband newly dx'd. 2nd or coming up Nov 13th at University of Wis. Dr. Ford supplied me with your newsletter. Tami Henderson
Toby and Tami Henderson <tami@forteautomation.com>
Rockford, Illinois Winnebago - Thursday, October 12, 2000 at 14:10:44 (CDT)

Our 4 year old cousin who live in Toronto Canada had 20 operations . Right now we are looking for some one in
USA who can help him with this (respiratory papillomatosis ) disease. We hope that some
one will let us know what to do, where to go in USA to receive medical help for this lovely boy...
Margaret Porada <mporada@cmcny.com>
N.Y, N.Y USA - Wednesday, October 11, 2000 at 13:39:53 (CDT)

My son is now 7 years old and has had Laryngeal Papillomatosis since February 1999. He has had numorous surgeries and the Drs are now suggesting Interfeon Therapy. If anyone could give me information, (good or bad) about this I would greatly appreciate it. Thank you
Becky <beckyhurston@juno.com>
Jacksonville, Florida USA - Tuesday, October 10, 2000 at 09:27:33 (CDT)

I'm very pleased that the RRPF has a web site. It makes getting and sharing information very convenient.
Peter Prowalny <pprowalny@bcbsm.com>
Warren, Michigan U.S.A. - Wednesday, October 04, 2000 at 09:40:23 (CDT)

Hello .. i am a speech path student in college and this is my project for senior class before graduation. I have to do a presintation on this topic. if any one has information or great places on this topic please emial me. We are also looking for resources to do a class presintation for the entire speech class when the project is complete so if any one have some video's or posters please email me ... THANK YOU SO MUCH ... IRA DUNNE
ira dunne <HYPDAZ@AOL.com>
patchogue, NY - Wednesday, September 20, 2000 at 15:49:24 (CDT)

My 14 1/2 year old son has had LP for going on 8 years now. The Navy was treating him every four weeks with a direct microlaryngoscopy w/co2 excision, but Jameses surgeon is being transferred. We had our first surgery with a "suction debreater". Kinda like a razor with a vacuum behind it. Has anyone else heard of this machine? He is being treated at Nemour's and Wolfson's Hospital in the Jacksonville area, and I do not know that this new surgery is any better than a laser. Any one else here in Jax?
Heidi Matney <BabygirlHGM@aol.com>
Jacksonville, Fl USA - Tuesday, September 19, 2000 at 21:56:57 (CDT)

My nice 7 year old suffering from pulmonary artiery hyper tension.kindly help me in getting treatment advice .Thanks
saurabh <saurabh_p@yahoo.com>
Bhopal,India, M.P. India - Monday, September 18, 2000 at 07:17:11 (CDT)

I am researching on behalf of my husband. This was great!
Judy Kane <kanejudi@aol.com>
Ft. Worth, TX - Thursday, September 14, 2000 at 11:13:22 (CDT)

I am 46 years old and have been diagnosed with RRP for a year now. I had my most recent operation in June (operation number 3). Today (Sept 8th) my examination showed a return of my papilloma. I look forward to sharing information with others suferring from this terrible disease.
Terry Metcalf <TJMet1@cs.com>
Akron, Ohio United States - Saturday, September 09, 2000 at 00:55:09 (CDT)

I just had surgery after 40+ years of remission. Great staff of Pulminary Doctors at U.C.L.A.
Is anyone aware of a support group in the Los Angeles area that I may get involved with.
Mike Kruer <mkruer@excelonline.com>
Sherman Oaks, California USA - Friday, September 08, 2000 at 23:35:01 (CDT)

I had LP at birth and required hundreds of surgeries until the age of 9. I am now 54 yrs old and have had no problems until recently when I began experiencing difficulty breathing. Preliminary tests indicate a reoccurence in my trachea. I must locate a physician knowledgeable and experienced in RRP in the Los Angeles area ASAP. Any help will be greatly appreciated. How grateful I am to have located this website and all of you!
Mike Kruer <mkruer@excelonline.com>
Sherman Oaks, California USA - Monday, August 28, 2000 at 09:49:16 (CDT)

Our 4 year old son was diagnosed with LP when he was 22 months old. He has been fortunate to have only needed surgery every 3-5 months. However, he has really never had a normal voice. Most of the time he whispers. We are very concerned about how he will do when he goes to preschool this fall. Any advice on how to help him cope would be greatly appreciated. Thank you.
Tony and Angie D <tony1220@frontiernet.net>
New Richmond, WI USA - Friday, August 25, 2000 at 16:53:06 (CDT)

our 8 yr old son shea was diagnosed withn jlp in june 1993 currently he is undergoing surgery every 4 weeks he is on interferon and cidofivir at present we would be grateful to hear from other families

linda and jimmy mahady <linji@iegateway.net>
dublin, ireland - Tuesday, August 15, 2000 at 18:21:44 (CDT)

I am a 33 year old female survivor of JLP. I am looking for more information about the last affects of this disease other than the obvious. I never knew that there were foundations that deal with JLP and find this very comforting.
Nancy Hargrave <Nancy_Hargrave@afcc.com>
Bedford, TX USA - Thursday, August 03, 2000 at 13:32:24 (CDT)

My almost eight year old son Ryan has RRP. He was diagnosed in 1995 and had seven surgeries during that year, the last one on December 5th, 1995. He has been in remission since then. I am afraid that is it back. He is choking on his food alot all of a sudden. This just started this week. We are really scared and are realizing that we were in denial. We really thought he was better for good. Well, now I have to get a hold of his previous surgeon and get the medical records and start the search for a new surgeon in our area. We used to live in Springfield, Missouri but now we need a surgeon here in California. If there are any families out here in the California Bay Area or near Sacramento, please email us right away if you know of a surgeon we can call. We have Kaiser medical insurance and I believe we are in a hurry. It is Sunday and Ryan has not eaten for two days because he is afraid he will choke. I am going to take him in tomorrow to start the process but would appreciate any help finding a great surgeon. Sorry to ramble on... pray for us. Thanks, Rene'e & Ryan
S. Rene'e Turner <Srtmcb@excite.com>
Manteca, CA USA - Sunday, July 30, 2000 at 21:33:07 (CDT)

My son was diagnosed with rrp when he was 2. Hunter is now almost 5 and is still having surgery every 3 weeks. We have tried interferon,but was not successful.HE has also been taking the ic3 complex but no signs of improvement has been seen. We are now currently looking into cidifovir treatment.What I would like to know is if there is a support group in the phoenix area.Feel free to contact me via email. It would be nice to talk to other families with the issues that my family has.
Autumn Rand <Arand@vantasinc.com>
phoenix, arizona usa - Tuesday, July 25, 2000 at 14:28:08 (CDT)

I'AM 43YEARS OLD & HAD 6 SURGERIES IN 17 YEARS.BUT I HAD 14 FREE YEARS AFTER THE FIRST LASER SURGERY IN1983.I HAVE HAD 3 SURGERIES IN THE LAST 4 YEARS.DID ANYONE TRY THE INJECTIONS? DID THEY REALLY WORK;WERE THERE ANY SIDE EFFECTS?
ALTON PETER CARRIERE <carriere@gateway.net>
carencro, la. - Tuesday, July 18, 2000 at 18:19:52 (CDT)

Thanks Mr. Stern for all your great help yesterday.
belle Orta <ortaim@medicine.ufl.edu>
Gainesville, Florida USA - Monday, July 17, 2000 at 09:27:01 (CDT)

I am 46yo and have had juvenile pap. for 4 yrs. I have just had my 10th op. I tried interferon but didn't work for me.I am going to see a homeopath this week.If anyone has had experience success or not please drop me a line.
Dianne Frail <mitch_frail@hp.com>
Upper Rawdon, Nova Scotia Canada - Sunday, July 16, 2000 at 19:36:05 (CDT)

My granddaughter who will be 8 yrs old on July 15,2000 was diagnosed with RRP on March 1,2000 and just had her 5th surgery June 30,2000. The Dr. said it was getting bigger and traveling down her throat and will probably have to take the Inferon. It is my understanding that this is injections? If anyone has took inferon treatments I would greatly appreciate any advise or comment about it. Also if anyone has any information about the onset of RRP in the vocal cords from an injury to the throat please contact me. The RRP Foundation has been very helpful to me in learning about RRP and knowing we're not alone in coping with it.
Karen Newman <Newman222@aol.com>
Dayton, Ohio USA - Monday, July 03, 2000 at 03:03:46 (CDT)

Thank you for all the hard work you've put into connecting people who would otherwise have felt they were in this alone. I'm lucky enough to be Leia Peeden's aunt, and Mom, if you find this, I am truly impressed!!!
Tammy Peeden <tpeeden@fuse.net>
Cincinnati, - Tuesday, June 27, 2000 at 09:15:25 (CDT)

I am 34 y.o and have been suffering from this for about 6 years now. I am having my 4th surgery tomorrow and hope this one finally does the trick! I am on a course of I3C and B3IM which seems to have slowed my recurrence cycle down, but NOT prevented reoccurrence.
Josh Dvorin <jdvorin697@aol.com>
Springfield, NJ usa - Wednesday, June 21, 2000 at 13:43:01 (CDT)

My daughter was just diagnoised with Laryngeal papilloma 1 month after her 6th birthday. Her throat was 90% occluded. We don't know when this started,we're trying to adopt her and the Drs. have told us she just has a gravelly voice. Ok what am I in for here? I've had the medical technospeack. Anybody with laymans terms. Thanks
Bill <Bilbotc2@home.com>
New Jersey - Tuesday, June 20, 2000 at 23:15:03 (CDT)

I have a daughter with a diagnosis of recurrent respitory pappilomas and would be very interested in receiving any information regarding this diagnosis.
Yolanda Duenas <yduenas@yahoo.com>
Chicago, IL Cook - Tuesday, June 20, 2000 at 14:44:41 (CDT)

I'm happy to have found your website and know that together, we can find a solution for our common problem.
Theresa S <taskesesqs@aol.com>
- Monday, June 19, 2000 at 10:15:50 (CDT)

I have had a problem with RPP since I was about 14 years old and now I am 45. I have had many surgeries and treatments non of which have had a long lasting impact. I am hopeful about the new anti-virus research that is going on, in some cases purtaining to other problems, which hopefully will eventually bring this this problem under control. Meanwhile, all we can do is patiently wait and make the best of the situation living with this virus.
Christopher E. Morrill <cmorrill@landmarknet.net>
Moultonboro , NH - Sunday, June 18, 2000 at 10:15:35 (CDT)

My husband, Robert Cheek, age 54 years, has a very serious case of RRP. I am so happy to find this web site.
Thank you.
Mrs. Martie Cheek <mcheek@xicor.com>
Wanaque, NJ USA - Monday, June 12, 2000 at 16:00:30 (CDT)

My 7 yo son was diagnosed last June with RRP, he has gone through 7 laser surgeries and has had the cido. medication injected. He is also on IC3 supplement, we go in next week to scope and see if any of this is helping. His vocal quality has gone down hill since the surgery, any suggestions?
Jane McKinley <janemc_99@yahoo.com>
Lexington, KY USA - Monday, May 22, 2000 at 11:24:14 (CDT)

I am a college professor and was diagnosed with laryngeal papilloma 2 years ago. I have had 3 surgeries. I saw my ENT today and will most likely have a fourth surgery in July. My ENT will use cidofovir for my next surgery. I am encouraged by the information I found through this website. Thanks!
Tom Rogers <tmrogers@ualr.edu>
Arkansas USA - Thursday, May 18, 2000 at 23:44:42 (CDT)

My daughter Jessica has RRP and was diagnosed at the age of 2 years old. After being treated with Acutane she has been in remission since October of 1996. She is doing well. My prayers are with each and every one of you!
Christine Fitts <c1699@flinthills.com>
Fort Riley , Kansas USA - Sunday, May 07, 2000 at 10:58:28 (CDT)

Hello! I am an OR nurse at Texas Children's Hospital. We are looking for information about RRP support groups. Please email me anything that you might have.
Thanks!
Kathryn Moore, R.N. <LKMoore@juno.com>
Houston, TX USA - Monday, May 01, 2000 at 12:14:15 (CDT)

I have the hpv virus and I am going in for surgery and iwould like someone to pray for me.
amie mealman
elburn, il usa - Saturday, April 29, 2000 at 22:08:46 (CDT)

i am going to nasville in may for my 13th surgery please keep me in your prayers
Kathy Quinton <kthyq@netscape.net>
Talking Rock, ga usa - Thursday, April 27, 2000 at 20:26:29 (CDT)

I have had papilloma for 6 years.I am currently seeking treatment at Nashville T.N. Please pray for me.
Kathy Quinton <kthyqn@netscape.net>
Talking Rock, ga - Tuesday, April 25, 2000 at 12:03:38 (CDT)

I have had papilloma for 6 years.I am currently seeking treatment at Nashville T.N. Please for me.
Kathy Quinton <kthyqn@netscape.net>
Talking Rock, ga - Tuesday, April 25, 2000 at 11:59:30 (CDT)

I would like to thank you for the valuable information that I have found through the RRP foundation Home pages. I have had problems with papallomas since I was a small child. I am now 46 years old and still looking for a cure. This week ordered the c13.Ihad read information on it about a years ago, but it wasn't until I read the updated information through your webpage that I decided to try the c13. I will keep you informed of the out come. Please keep up the good work

DEBRA K. MATTHEWS <dmatthews@adamsallied.com>
sugar hill, ga gwinnett - Friday, April 21, 2000 at 07:45:15 (CDT)

Our Grand son age 4 has LR
Marjorie BearDen <bearden@enetis.net>
rapid city, South Dakota USA - Friday, April 14, 2000 at 23:19:04 (CDT)

I am 40 years old and since August 1999 i have LP.

Georg Rensing <hgr1602@hotmail.com>
Heidelberg, Baden-Wuerthenberg Germany - Thursday, April 13, 2000 at 05:58:06 (CDT)

My name is Morgan Toll. I have had RRP since I was 8 months old. I am almost 10 now. I have had over a 150 surgeries...I pretty much stoped counting them. I had a trach put in when I was 6yrs. old because I was not getting enough air to my heart and developed pulmonary hyper-tension. My heart is better now...but I still have the virus. I am so glad for this web site...so now I don't feel so alone.
Morgan Toll <Kimmtoll@aol.com>
Memphis, Tn. United States - Wednesday, April 05, 2000 at 23:28:55 (CDT)

I am 45 years old and have been having surgeries since I was 5. It is nice to have this site because it is easy to feel that you are the only one going through this.
Craig Tisdale <ctisdale1@juno.com>
Grayslake, IL - Monday, April 03, 2000 at 14:09:24 (CDT)

I am 37y.o and have laryngeal pap. I was first diagnosed 7 years ago and have been in remission for 4 years, but it has just recurred. I am just starting I3C. And my second course of Tagamet.
Chuck Rowlett <cmaxrow@lamere.net>
Saco, ME USA - Wednesday, March 29, 2000 at 19:07:23 (CST)

My daughter Dara is 12 years old. She is getting ready to her her 26th surgery. She was diagnosed at 4 years old. Compared to many others we have read about, Dara considers herself lucky to have had only this many. I admire her for her stoicism. We also are extremely grateful for the Sterns and everybody else who has allowed the RRPF Newsletter to continue as it has. This is the only avenue I have been able to obtain information from besides a medical library. Thank you.
Andrea Tagliarini/Dara Lisicki
Tampa, FL - Wednesday, March 22, 2000 at 18:18:08 (CST)

MY DAUGHTER WAS DIAGNOISED WITH RRP AT EIGHTEEN MONTHS AND 72 SURGURIES BEHIND HER.SHE HAS GONE INTO REMISSION FOR THE LAST SIX MONTHS WITH NO OCCURENCE.THANKS TO A NEW TREATMENT CALLED CIDOFOVIR. THIS TREATMENT HAS SAVED MY DAUGHTER'S LIFE AND HAS GIVEN OTHER RRP PATIENTS A LIFE WITH LESS SURGERIES.
CHRISTINA CRAWFORD <CRAWFISH5@EARTHLINK.NET>
FT.RUCKER, AL DALE - Thursday, March 16, 2000 at 21:53:41 (CST)

My son Cody who will be 3 3-9-00 has rrp and we found this out Feb. of this year. He had surg. on Feb.10,00 and it's back!
Heidi and Marc Duran <tentbaby@aol.com>
Seattle, Wa - Wednesday, March 15, 2000 at 22:45:33 (CST)

My daughter Charlotte has had 117 laser surgeries for laryngeal papillomatosis. She is 8½ years old and she has had this since she was 2.
Pamela Rowe <PamelaRowe@tesco.net>
Kidderminster, Worcestershire England - Wednesday, March 15, 2000 at 12:58:09 (CST)

I HAVE COME IN CONTACT WITH A FAMILY, WHO HAS A CHILD WITH RRP, AND ENJOYED THIS WEBSITE. IT HAS BEEN A HELP TO ME IN UNDERSTANDING RRP.
LAURA APPLEGATE <N8JSZ316@BRIGHT.NET>
PEEBLES, OHIO ADAMS - Wednesday, March 15, 2000 at 11:35:47 (CST)

My husband was diagnosed at the age of 4. He spent a huge amount of time in the hospital prevous to laser surgery at the age of 7 he was trac'd. He is a otherwise healthy man with three children, a good job, home ect. For all of you with young children -- he is leading a decent life. Have faith, his faith sustains us!
Beth Tears <www.dekbs@frontiernet.net>
- Sunday, March 12, 2000 at 19:51:48 (CST)

My 22month old son was diagnosed with RRP about four weeks ago. Since then, he has had two treatments of Cidofovir. After his first treatment, my son's father and I had noticed a dramatic change in our son's voice. We couldn' be more pleased with the results, but at the same time discovering that my son had this illness happened suddenly. What I do not understand is that my son is a twin and his twin brother is not affected by this at all. Any answers???
LaWanda Phelps <lawandarenee@yahoo.com>
Aynor, SC US - Thursday, March 09, 2000 at 22:41:05 (CST)

We finally got on line and wanted to let everyone know how much we appreciate getting the newsletters. It is comforting in a way to know that we are not alone. My son Colby, age 8, was diagnosed at the age of four.It was quite a struggle getting our doctor to finally recognize that there was a problem. We then found a wonderful Doctor at Columbus Childrens hospital. Dr. D. Willett introduced us to the foundation, he has performed 7 surgerys on Colby and has him on Indoplex. It has only been 8 mos. since he began the medication so there are no big results to date. We are scheduled for another surgery on April 17, please keep Colby in your prayers.
Lynn Emery <shstgrmom@cs.com>
Shadyside, Ohio United States - Thursday, March 09, 2000 at 19:47:25 (CST)

Hi guys I finally have a way to tell everyone just how great your foundation is. My son Wade had his first surgery 3 days before he turned 5. He is now 13 and has had over 50 surgeries. If it wasn't for your letters I received through the years I think I might have lost it. Up here in Brockville no one seemed to know much if anything about RRP. Sometimes it felt like Wade and I were the only ones going through this, but after receiving information from your foundation it was a bit easier to deal with knowing there was so many other people going through the same thing. If anyone feels like talking about what they are going through I be happy to listen. Contact me at rogerfox@ripnet.com

Well I figured I'd save the best for last, on September 2, 1999 (my birthday) Wade went in for another surgery and we couldn't beleive it the doctors found nothing. He still has to be checked but up till now there has been no more surgeries. I still hope and pray that someday soon a cur ewill be found. Once again thanks .
Zelda Fox <rogerfox@ripnet.com>
Brockville, Ontario Canada - Thursday, March 02, 2000 at 22:12:56 (CST)

I am 28 years old now. I experienced adult onset of RRP at the age of 19. At the worst I had surgery every 9 months. I thought my cross was too much to bear until I found the RRPF. I now realize how lucky I am and how non-aggresive my disease is. My heart goes out to the brave children who battle RRP on a day-to-day basis, and still keep a positive attitude. God bless you all. Audrie Munsch
Audrie Munsch <amfm95@aol.com>
Pearl River, NY - Sunday, February 27, 2000 at 21:21:35 (CST)

My 10 month old beautiful son Mitchell, is going to Children's Hospital for surgery on Feb. 29th for the first time. We don't know if it is RRP yet, (not until they are biopsied), and I prayer this is not the case. Anyway, this is an informative site and I appreciate your phone call Marlene. Please say a prayer for my beautiful son.
Thank you,
Diane
Diane Hoyes <dimitch10@aol.com>
Atlantic City, NJ USA - Thursday, February 24, 2000 at 00:15:56 (CST)

Our 9 year old son, Jacob is scheduled for his 10th laser surgery on March 9,2000. Learning of this website today has given us great comfort that there are other parents and patients with stories and suggestions.
Lori Marshall <marshall@mhtc.net>
Montfort, WI USA - Tuesday, February 22, 2000 at 21:16:14 (CST)

MY 7 YEAR OLD DAUGHTER HAS RRP
CHRISTIE WILSON <cece@digitalexp.com>
perry, FL U.S.A. - Saturday, February 19, 2000 at 18:36:57 (CST)

I did not realize so many people had rrp.
brenda fleming <brenda144@webtv.net>
ticonderoga, NY Essex - Friday, February 18, 2000 at 10:43:49 (CST)

My son was dianosed with RRP at the age of 5months. He has had 9 laser surgeries and is on Interferon. I am so glad this website is avaiable so I can get informed about this disease. I wish I had some support down in this island though. I really need to talk with people who have had or have family with this disease. It would help me and my son greatly. Thank you.
Janet <Ianeta@aol.com>
Honolulu, HI - Sunday, February 13, 2000 at 15:22:10 (CST)

I was referred to your website by Dr. Atkins at U of Pennsylvania Hospital in Philadelphia. I have had five surgeries and my RRP is now classified 16-18, pre cancerous
Joseph Fleming <Joseph_Fleming@ars.aon.com>
Blackwood, New Jersey USA - Wednesday, February 09, 2000 at 15:16:08 (CST)

I am a 34 year old RRP patient who had successful long term treatment with Alferon. I am now of off Alferon waiting for a cure.
Thanks for this website.
Daniel Corredor <dcorred@azurix.com>
Houston, Texas USA - Monday, January 31, 2000 at 08:59:49 (CST)

I just found your site and its great to have such information available esp. about the current research. Thanks so much.

Angie Knee <angie.glen.knee@nf.sympatico.ca>
Corner Brook, Newfoundland Canada - Thursday, January 27, 2000 at 08:03:58 (CST)

I am glad to see that there is information about alternative
treatments available. I would like information about the success rates and side effects of any alternatives, if possible.
Joanne Vitovsky <vitovsky@umich.edu>
Ann Arbor, MI USA - Monday, January 24, 2000 at 12:13:27 (CST)

I'm so glad to finally find a group of people who are working toward treatments other than simple excision! Hats off to the Sterns and the others who have developed this network.
Wayne Barringer <waynebarringer@earthlink.net>
Kirkland, Washington US - Friday, January 21, 2000 at 01:26:23 (CST)

I just had my 12 surgery yesterday - thank you for this encouraging site.
Colin Montiford <calvary@tpg.com.au>
Tumbi Umbi, NSW Australia - Wednesday, January 19, 2000 at 23:40:42 (CST)

I've appreciated the information and support from this site.
Earl Ray Sutterby <ERSut@aol.com>
Lee's Summit, Missouri USA - Monday, January 17, 2000 at 14:34:08 (CST)

I was pleased to be able to read
about the new therapies avaiable to RRP patients. My daughter Jenna will be trying out Cidofovir in the near future and we hope that her results will be equal to those that have been on this therapy
Marilynn Rupp <joerupp@mindspring.com>
North Royalton, Ohio U.S.A. - Saturday, January 15, 2000 at 20:13:25 (CST)

i'm never knew there was a web site. I'm really glad there is.
naquisha bourget <nitney 17@aol.com>
manchester, nh us - Saturday, January 15, 2000 at 18:27:27 (CST)

Please accept Esther and my thanks, Bill and Marlene, and all the other RRPF volunteers and members for all you do to
improve awareness and communications in the RRP community. This website and our RRPF listserve is now linking the community in new and wonderful ways. Thank your for taking the responsibilities for these important initiatives. We hope that as the RRP community becomes aware of the Foundation, it will be supported vigorously to push for more awareness, information, research and priority for treatment. Thanks you, and best wishes to all for years of good health.
Dr. Ed Beck <esb1@juno.com>
Harrisburg, PA USA - Thursday, January 13, 2000 at 06:04:00 (CST)

Mother of Lindsay Stern, diagnosed with RRP in Nov. 1991. In remisssion since June of 1992 after 11 surgeries in less than 9 months.
Marlene Stern <Marlenelin@aol.com>
Lawrenceville, NJ USA - Monday, January 10, 2000 at 17:59:17 (CST)

In 1992 shortly after our daughter Lindsay was diagnosed with RRP, we started the RRP Foundation in an attempt to reach out and talk to others in similar situations who could understand what we were going through. The evolution of the internet and the web has made communicating with others throughout the RRP community so much easier.
Bill Stern <bills@rrpf.org>
Lawrenceville, New Jersey U.S.A. - Monday, January 10, 2000 at 06:05:43 (CST)