Recurrent Respiratory Papillomatosis

RRPF Officers, Directors & Advisors

Marlene Stern

President

P.O. Box 6643

Lawrenceville, NJ 08648-0643

(609) 530-1443

marlenelin@aol.com

Bill Stern

Treasurer and Director

P.O. Box 6643

Lawrenceville, NJ 08648-0643

(609) 530-1443

bills@rrpf.org

Henry Woo, Esq.

Secretary

Medtronic International Inc.

Suite 1602 16/F., Manulife Plaza

The Lee Gardens, 33 Hysan Ave.

Causeway Bay,

Hong Kong

henry.woo@medtronic.com

Chris Neuberger

Director

12505 Cobblestone Pkwy.

Oklahoma City, OK 73142

(405) 603-8850

cneuberger@eti1.com

Maura Burke Weiner

Director

4900 Fieldwood Court

Fairfax, VA 22030

(703) 691-1922

mauraweiner@serviceimpact.net

Susan Woo

Director
Haking Court, Flat 9B
43 Cloudview Rd.
Northpoint
Hong Kong, SAR
(852) 2812 7379

susanleewoo@hotmail.com

Scientific Advisory Committee

Thomas R. Broker, PhD, University of Alabama at Birmingham Schools of Medicine & Dentistry

Linda Miller, RN, MSN, Children’s Hospital of Philadelphia

Clark Rosen, MD, University of Pittsburgh Voice Center

Robert J. Ruben, MD, Albert Einstein College of Medicine

Keerti V. Shah, MD, DrPH, Johns Hopkins University School of Hygiene and Public Health

Bettie M. Steinberg, PhD, Long Island Jewish Medical Center

Haskins K. Kashima, MD, Johns Hopkins University School of Medicine [Emeritus]

Voice Specialist/Advisor

Julie Bowne, M.S., CCC-SLP

RRP Newsletter Editors

Chris Neuberger
Jennifer Woo

Other RRP Newsletter Contributors

Randy Sparkman

Marlene Stern

Bill Stern

RRP Reference Service Editor

David Wunrow

RRPF Fundraising Coordinator

Ed Weiner

(703) 691-1922

eweiner@weinerandassociates.com

RRPF Corresponding Secretary

Christine-Hartman Davis

RRPF Publication and Subscription Policy

The RRPF produces two publications, the RRP Newsletter and the RRP medical reference service. The RRP Newsletter focuses mainly on the human and clinical aspects of recurrent respiratory papillomatosis and in this regard targets a broad readership, including patients/families, attending physicians/nurses, as well as researchers and the general public seeking to stay in touch with RRP from a clinical perspective. The RRP medical reference service serves those in the community seeking a more comprehensive understanding of this disease. Please help us by supporting these publications and other RRP services including patient outreach, support, advocacy and research.

Subscription Policy and Suggested Minimum Annual Donations:

RRP Newsletter

Professional/Corporate - $25
Individual - $15

RRP Newsletter plus Medical Reference Service

Professional/Corporate - $40
Individual - $25

[Note: Issues of the RRP Newsletter and Medical Reference Service are available on the website.]

RRP Network News

Our international support network has grown to approximately 800 respiratory papilloma families. Patients range in age from about 2 to 88 years. Domestically, patients are located in 48 states plus the District of Columbia. Outside the U.S. there are currently 33 patients from 14 countries.

Our thanks to all who have taken the time in the past to fill out the RRPF Patient/Therapy Survey. There is now a new comprehensive RRP patient survey available online at http://www.rrpf.org/rrpf/survey. So even if you have already completed a survey, help us to learn more about this disease by taking a little time to complete the new survey. Please make sure to alert us of changed addresses by checking the “new address” box. There is also a box which we ask you to check if you do or do not want your name and address information to be included in the RRPF Patient Directory. We are requesting the information contained in this survey be made available for RRP research. In this regard there is a place in the beginning of the survey to grant permission.

As our support network has grown, we have become more dependent on the patient questionnaires to maintain our mailing list and keep our database of RRP patient information up to date. If you are updating a previously filled out questionnaire, you need only identify yourself, and answer only those questions where you have new or updated information to provide. This is also the case for the new comprehensive survey, just make sure you specify the patient’s first and last names and their year of birth.

Doctors and nurses treating RRP patients take a few minutes to fill out the practitioner survey form.

You can find the online “patient survey” and “practitioner survey” respectively on the “patient” and “practitioner” page links from the RRPF home page (www.rrpf.org).

……………………………………………………………………

RRP Web/Internet News

by Bill Stern

The Internet is now the most often used information exchange for the RRPF. Our website (www.rrpf.org ) has recently been redone with a totally new look, which we hope will make finding information easier. It contains a wealth of information relevant to patients, families, doctors, nurses and researchers. It includes an online database of RRP practitioners (updated through January 2005). The website has a new Interactive Discussion Forum which allows for the posting of questions, comments and replies to previous postings relevant to RRP. We also have the RRPF Email Listserve.(see below), linked to the home page. As noted above, you can find the new RRPF Patient/Therapy Survey and RRPF Practitioner Survey forms on line, which allow RRP patients and caregivers to easily submit their survey to the foundation. This is a very important aspect of the Foundation in that this information is used in analyzing RRP treatment therapies, experiences, etc. We ask that patients and practitioners update their survey at least once a year.

Also, we maintain an online library of RRP Newsletter and RRP Reference Service issues plus links with many other sites relating to RRP and much more.

If you have some experience/expertise with the WWW and would like to help us improve our website, please contact Bill Stern.

RRPF Listserve Highlights

by Randy Sparkman

Since its creation in 1999, the RRPF-sponsored e-mail distribution list has grown to over 400 members. The list continues to serve as a valuable source of information on the diagnosis and management of RRP. But it has also emerged as a vibrant community where patients and caregivers can share experiences and support.

Over the past year, the mailing list has generated 3-5 messages per day. These threads have included discussions of patient experiences, various treatment options, risks and success rates, discussions of treatment centers and resources as well as environmental considerations. Extensive discussions have taken place regarding the new HPV vaccine, its safety, efficacy and possible impact on RRP. There have been a notable number of interactions between researchers and patients. All communities are well served by these discussions.

Listserve users should be aware that the RRPF e-mail list is vulnerable to the same issues as all on-line services. Access to the list archives is limited to only those users who have registered with the hosting service, YahooGroups. But participants in the list should not assume any privacy of information posted there. Anyone can register for Yahoo Groups, for free. Subscribers with privacy concerns should not post full names, postal addresses, e-mail addresses, etc.

Users should also protect themselves and others from computer viruses. Users should not forward e-mail attachments to the mailing list and should not open any attachments within messages received from the list. This does not mean that the mailing list increases the risk of receiving a computer virus, it is simply good practice to delete e-mail messages with attachments unless you are absolutely certain of the identity of the sender and the content.

Basic subscription information and complete list archives are available on the Internet/World WideWeb at: http://groups.yahoo.com/group/rrpf. The messages may be generated and received from within your e-mail computer client or can be completely generated and received from the yahoogroups rrpf list web pages. Messages may be received one at a time or in a "daily digest". Anyone within the RRPF community that needs technical assistance with any aspect of the mailing list can send an e-mail to: jubrising@gmail.com

RRP Patient Profile

First an introduction, my name is Kelly and I am 27 years old. I live in Halifax, Nova Scotia, and have a rare form of what people refer to as “a not so bad disease”, papillomatosis. I was diagnosed with it at age 4. Since age four there has been too many operations to count (I believe we lost track around 100 quite a few years ago). The disease is most common in children and its progression is said to slow down, even to stop altogether once the juvenile in question reaches puberty and the body’s hormone levels adjust and change. As I explained, I am 27 and still fighting this “not so bad disease”.

This is where you come in. This is a cry for help. I need something to inspire me, help respark the hope within me and renew the desire to keep on fighting.

As far as treatment, I have only ever had laser surgery. I have never talked to anyone else suffering from my disease and have developed severe panic attacks revolving around the operations. My ENT specialist is very caring but I have so many questions and he has very few answers.

I definitely feel selfish writing this letter, as I know there are people who are worse off than myself. But honestly I am burnt out, I am not sure how much fight is left within my heart. I have been fighting what others perceive to be a manageable “not so bad disease” for 27 years.

I struggled with this disease from birth, long before it was diagnosed. My mother has been my angel from day 1 sensing trouble with my crying and breathing from the minute she took me home.

My mom, was concerned that her baby girl wasn’t living the happy healthy life a newborn deserved, the life that she was determined to give her. Essentially her perseverance, however annoying to the doctors treating me, SAVED MY LIFE.

My Mom’s Story

Shortly after bringing my daughter home from the hospital, I discovered her difficulty when breathing and the odd sound of her cry. The doctors repeatedly told me I was being an over active new mom. I did not agree.

For 4 long years, I harassed the doctors and, pushed and pushed them; until finally they decided to humor me by taking her into the operating room to see if there was something going on with her throat after all. We (being her parents) waited with great anxiety outside the OR; we didn’t wait long however, within minutes the doctor came out and said he would see us in his office in an hour. They brought my child out to me and said nothing more.

The anticipation was overwhelming. We rushed her home and then went to the office where we were told she would need surgery immediately, that the growth in her throat was closing her air way. We were told to take her to Halifax (the biggest city in our small province of Nova Scotia) where there was a specialist who would remove the growth.

Well here it is 24 years later and she is still having surgeries, although they have gone from being every 6 weeks with a 2-day trip to the ICU unit (throughout her childhood), to being able to have the surgery and go home the same day.

Today the surgeries are better and the stay in hospital shorter, however, the trauma is much greater. You see Kelly now suffers from extreme anxiety, panic disorder which developed as a direct result of the many devastating surgeries and the lack of compassion from not only cruel children who made fun of her constantly throughout her childhood but from nurses poorly equipped to deal with Kelly’s level of fear and anger at the amount of operations she was forced to endure at such a young age, and then on into adulthood. She does sound and will always sound as if she has a cold. Each surgery is now more traumatic than the previous one and the so-called professionals that work with her do not understand her fear nor do they try to understand the panic. As her mom, I have spent my life feeling guilty and sad that somehow I did this to my child. Even today I do not know what more I can do to make her life better. It is very draining and I pray that with God’s help you can finally help Kelly find some sort of peace surrounding the treatment of her disease, as there is still no end in sight.

Back To My Impute

This afternoon I had a perfect example of why my disease supposedly “one of the better diseases you could have” wasn’t such a day at the beach.

The first stage of the day may be described as almost pleasant, I mean as pleasant as one could expect given the circumstances. Those circumstances being, that I am about to be put under for well over my hundredth procedure each exactly the same as before, however the hospital has a few unsung heros who find just a few minutes to make the day more bearable. This would include anyone who has been with me through it all, my doctor and some of the nurses who remember carrying my terrified, trembling little body into the OR. Now they hold my hand and offer true empathy and compassion as I lie, a little bigger now, terrified and trembling still.

You think, due to my experience with this procedure and because of trial and error, when it comes to what does and does not work well during the procedure, I would be given some credit or say in what I need after all these years.

Keeping with the giving credit where it’s due, I have to say a lot of people involved in my case at one time or another humor my requests or at least take the time to calmly, gently explain the alternatives. It is these generous souls who have made these experiences bearable up do date. Most of the staff that knows of me or has treated me over the past 27 years knows the trauma and anxiety levels that take over (If you’ve never experienced one “take over” is a pretty accurate word to describe just how little control you have of what is taking place with your body).

There are levels in my case, to how severe my attack can get. Here is where the trauma begins.

I have spent years conferring with psychologists, psychiatrists, my ENT, clergy, prayer, self-help books, and through this journey realized the solution was simpler for me. I need to feel safe in order to avoid the panic attacks.

I feel safe with my ENT doctor by my side, my mom by my side and there are even a few key nurses who have throughout my journey lent me their compassion,

Understanding my fear and terror are real and the symptoms just as intense as if brought on by a non-panic situation, I cannot stop them on demand. I am not faking or looking for attention, truth be told, if you asked me what I fear most in this world, it is the panic attacks and how real and devastatingly they affect me.

I am the first to admit that doctors and nurses are too busy, and have even sicker than me to tend to, so a few years ago we (my support team and I) had it worked into my file (or thought we did) that if I start to feel anxious and ask for my mother they were to allow her against policy, into whatever the restricted area, to be by my side and help prevent the more horrifying stages of the actual attack.

When an attack is coming on I start feeling anxious, my skin feels tingly, I begin to hyperventilate, my heart starts to beat erratically, sometimes I faint or urinate myself. Sometimes my muscles become rigid and even paralyzed, sometimes times I can’t speak. The not speaking symptoms are a bit less painful than the alternative, because when I loose control of my emotions and the crying starts the vocal cords in need of rest after their recent surgery become strained with terrified tears and begging for my mother to save me from what feels in that moment to be a life or death situation.

Today after the procedure I began experiencing some slightly different symptoms that can be scary after over a hundred procedures without this symptom. The explanation was simple and I was appeased, however the anxiety had already started and the nurses’ comment that “you need to get over this and just stop,” didn’t help. Through labored breaths I asked for my mom explaining she knew what to do. I also pointed out a note that I made sure existed on my chart saying “get mom at the first sign of trouble.” The nurse then replied “if you can get this under control for mom, you can get it under control for me, I am a nurse. Stop hyperventilating now and breathe.”

Things just kept on progressing from there and I suffered a terrifying indignity that may well have been avoided with a little compassion for the terrified little 27 year old girl that still needs help dealing with this “not so bad disease”.

You may be wondering what can you do. Well any support would help I am at a loss and in need of guidance. ... honestly I am about ready to give up. It is just emotionally tearing me apart. Also, because of my severe panic reactions to the surgery, I find my post operative care by the nurses only adds to the trauma of my disease.

I want you to know that the part of the story told to you today is only a part of me. Panic disorder does not control my life. It just takes over for a few hours maybe days, a few times a year during treatment for my “not so bad disease”.

The rest of my life has been the best I could make it. I wanted to see the world with no money so I joined the cruise ship and resort industry. I worked hard at these jobs but gained confidence and a sense of others and a sense of their challenges and formed lasting supportive relationships all over the world.

I am enthusiastic and caring and would honestly give up anything of myself to save anyone from anything even resembling the pain I have endured through my “not so bad disease”.

Others describe me as outgoing, and quirky and I would like to preserve that part of me before I loose my fight and anxiety and depression start creeping around into non-hospital related parts of my life.

As my age progresses, thoughts of having children terrify me. Is there any chance I could expose them to this? I have so many questions; I have been crying since Friday after my latest treatment and haven’t convinced myself there will be a next treatment, because when I left that hospital today I had given up. I wasn’t going back, not to face the horrors and fear again. This “not so bad disease” should allow me quite a few years of trauma free life before becoming truly life threatening (the nodules would eventually cover my airway) and I would face that possibility of death when it stared me in the face.

That’s not me though, that is the fear talking. I fear the panic and I fear my uncertain future concerning this disease.

I am open to suggestions; I am willing to try anything.

The truth of the matter is in 6 months I will be expected to walk through those operating room doors once again and right now I can’t honestly say I’m up for that fight.

Kelly
ktarso@hotmail.com

RRP Patient Stats

Please complete or update the comprehensive RRP patient survey available online at: http://www.rrpf.org/rrpf/survey

Very preliminary statistics may be viewed at:

http://www.rrpf.org/rrpf/survey/update/admin/

user = “rrpf”
password = “Foundation” (case sensitive)

(Caution: These are “raw” stats and in some cases may not make sense.)

Support and Fundraising Activities

[For support of new RRP research initiatives, please see section on “Science and Research Activities”]

Support for RRP patient related travel expenses:

The RRPF has dedicated a limited amount of funds to provide indirect support of some travel expenses to obtain treatment for RRP families truly in need. If you would like more information please contact:

Geni Mesi

5780 Village Way

South Ogden, Utah 84403 (801) 695-0108
e-mail: mesifam@hotmail.com

Fundraising Activities:

4th Annual Hockey Night for RRP

On Saturday night, January 21, 2006, Ed and Maura Weiner held the 4^th annual Hockey Night Fundraiser for RRP in Washington DC at the MCI Center. Ed and Maura netted the RRP Foundation over $10000.

Running For RRP

On January 7, 2006, Julie Bowne and her sister ran the Disney half-marathon in Orlando, Florida. Julie’s and her sister’s efforts helped promote RRP awareness and raised over $2000 for the RRPF.

On April 30, 2006, RRP Foundation Director, Bill Stern ran the New Jersey Marathon for the second time to raise awareness and funds to support RRP research and networking between patients, physicians and scientists. Donations for this event came to about $1000.