Vol.7 No.1 An RRP Foundation Publication 1998 Spring
P.O Box 6643, Lawrenceville, NJ 08648-0643
__________________________________________________________________________________________________
Contents
° Opening Comments - p.1
° RRPF organizational information - p.2
° Atlanta Area Support Group Meeting Announcement - p.2
° RRP Remission News - p.2
°RRP Network / Web News - p.2
° RRP National Issues - p.3
° Patient Statistics - p.4
°Adjunct Therapies - p.4-7
indole-3-carbinol / new product announcement - p. 5-6
PDT at LIJ - p. 6
Mumps vaccine - p. 6
Cidofovir: a report from Pittsburgh - p. 6-7
• Research Activities Update - p. 6-7
Fish oil and HPV - p. 7
° RRP Perspective - p.7
° Patient Profile - p.7-8
• A petition for more funding of RRP research -
p. 8 & enclosure
• RRPF Mission Statement, Information/Support Centers, subscription form - enclosure

From an Editor

I want to take this opportunity to welcome Chris Neuberger as the primary editor for this and future issues of the RRP Newsletter. I thank Chris for volunteering to take on this task and I am confident he will put together a quality product. I will still be quite actively involved with the newsletter and now with Chris managing much of the "hands on" work, it will hopefully allow me to focus a bit more on some of the scientific and database issues. We also continue to welcome others who are interested in helping to gather information and write articles. My thanks to all those who have responded with offers to help. If you would like to assist in any way, don't hesitate to contact me at the address listed on page 2.
On a sad personal note, I would like to share with you our memories of our poodle Simka who we recently put to sleep just before her 12^th birthday. During Lindsay's period of active disease, Simka would greet us upon our return from the hospital with unrestrained joy that gave us a pleasurable break from this chronic disease. In just a single day this past January, she very suddenly went from a seemingly healthy active dog to one who was terminally ill, as a massive adrenal carcinoma ruptured. This reminder of how fragile life can be reinforces just how important it is to try to enjoy as much of life as we can while we are able to.

All the best,
Bill Stern

Introductory Comments

This is my first newsletter as the new editor for the RRP Newsletter, and I would like to briefly introduce myself. I have been a member of the RRP network since 1994, shortly after I was diagnosed with RRP. The RRP Network has been very
informative in my own personal case, as it offered insights into a disease that doesn’t have a lot of answers, or at least easy answers that we would like to hear as patients, practitioners, or relatives of patients. As the RRP Network has been a vital source of knowledge for my own personal case, I felt the need to assist with the services provided by the Network. As with all RRP patients and families of patients, RRP has affected my life in a way that I would never have expected. The experience that I have had with the RRP Network has been very helpful in living with RRP. My goal as editor, is to continue the RRP Mission of “communicating information, providing support, serve as an information resource, promote public awareness and aid in the cure, prevention and treatment of RRP.”

Chris J. Neuberger
(405)749-8499; e-mail: cneuberger@UECequipment.com

P.S. Thanks to Lindsay and her friends Raquel, Megan, Allison, Sadie and Katie who helped stamp, address and stuff these newsletter mailing envelopes.

We are most grateful to all those individuals, medical professionals and corporations who have supported the RRPF. Although it is impossible to publish the names of all who contribute, we extend our sincere thanks to everyone who has supported our efforts.
Future donations from individuals, professionals or from the business community will be very much appreciated. Tax deductible contributions may be made to:
RRP Foundation
P.O. Box 6643
Lawrenceville, NJ 08648-0643

Do you donate to the United Way through your employer? You can select a "Donor Choice" option which would allow you to direct a donation to the RRPF as the 501 (c) (3) of your choice.

We would like to take this opportunity to acknowledge donations received from the following local United Way chapters during the past year: Central Maryland, Southeastern PA, Jackson County Oregon, San Diego County, CA., Washington, DC. and Mercer County, NJ. We thank all those individuals who contributed in this way. Your help is very much appreciated.

To physicians and nurses: Please distribute copies of this newsletter to your RRP patients.
Please register with the RRPF by completing the Practitioner Questionnaire enclosed

RRPF Officers, Directors & Advisors

Marlene Stern
President
P.O. Box 6643
Lawrenceville, NJ 08648-0643
(609) 530-1443
mstern@princeton.edu, rrpf@aol.com

Bill Stern
Treasurer and Director
P.O. Box 6643
Lawrenceville, NJ 08648-0643
(609) 530-1443
wfs@gfdl.gov. rrpf@aol.com

Henry Woo, Esq.
Secretary
Medtronic International Inc.
Suite 2002, C.C. Wu Building
308 Hennessey Rd.
Wanchai
Hong Kong
henry.woo@medtronic.com

Diane Burke, RN
Director
Department of Otolaryngology
The Univ. of Iowa Hospitals and Clinics
E230 GH, 200 Hawkins Drive
Iowa City, IA 52242
(319) 356-1765
diane-burke@uiowa.edu

Susan Woo
Director
101 Repulse Bay Road
Apt. A3/1^st floor
Hong Kong
852-2812-7379
writeus@netvigator.com

[Please see the enclosure for a complete list of the RRPF regional and state coordinators]

Scientific Advisory Committee

Thomas R. Broker, PhD, University of Alabama at Birmingham Schools of Medicine & Dentistry
Haskins K. Kashima, MD, Johns Hopkins University School of Medicine
Linda Miller, RN, MSN, Children’s Hospital of Philadelphia
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
Kathleen Sullivan, RN, Children’s Hospital of Boston

Atlanta Area RRP Support Group Meeting
Thursday June 4^th at 6PM, at the St. Joseph's Hospital Board Room. Contact Bill Widmayer at 404-848-1253 days, 770-921-9497 evenings or widmayer@mindspring.com.

The RRPF produces two publications semi-annually, 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 and advocacy.

Subscription Policy and Minimum Annual Donations
RRP Newsletter
Professional/Corporate - $25
Individual - $15
RRP Newsletter plus Medical Reference Service
Professional/Corporate - $40
Individual - $25
(see RRPF subscription form enclosed)
[Note: Back issues of the RRP Newsletter and Medical Reference Service ($10/issue) are available upon request, subject to availability]

RRP Remission News

By Judy Thompson and Marlene Stern

These very brief patient profiles are intended to let you know that some of those with RRP are doing quite well.

Six and a half year old Katelynn Mann, from California, has been in remission since the end of 1996. Prior to then, she underwent 41 surgeries in a four year period. Although she did take I3C for a short time in 1995, her mom, Terri, does not think it was the reason for the remission.
William Streeter, now 73 years old from Illinois, went into remission approximately 4 years ago. His first surgery was in January 1964 and his last surgery was February of 1994. He is still in remission with no alternative treatments.
From New Jersey, John Gore (age 46) has been in remission for two years which he says was caused by “pure luck” and no treatment. He does feel, however, that keeping the immune system strong is important to RRP treatment and he does this by keeping in control during stressful situations.

Others still in remission include: Six year old Martika from Alabama; Ariel from California, now 6 and a half years old; Steph from Florida, age 24; Jeff from Illinois, age 50; Nine year old Anthony from Kentucky; Andrea age 31 from Louisiana; Kevin from Maryland age 39; Trey from Maryland, age 5; Cara from Michigan at age 15; Emily from Michigan, now 9 and a half years old; Leah from New Hampshire age 18; Lindsay from New Jersey, now 8 and a half; Linda from New Jersey now age 42; Melissa from New York, who is also 8 and a half; Rita from Pennsylvania now 4 years old; Ralph from Pennsylvania, now age 71; Kaitlyn from Tennessee, now 5 and a half and Smokey from Virginia, age 26.

RRP Network News

Our international support network has grown to over 400 respiratory papilloma families. Patients range in age from 1 1/2 to 83 years and are located in 44 states, the District of Columbia, three Canadian provinces, the United Kingdom, Spain, Macedonia, Croatia, Morocco, Chile, Hong Kong, Brunei and Australia.
Our thanks to all who have taken the time to fill out the RRPF Patient/Therapy Survey. Please note that there is a box near the top of the front side which, when checked, will alert us to an address change; there is a box below the name and address section which we ask you to check if you 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 survey to grant permission.
As our support network has grown, we have become more dependent on the patient questionnaires to keep our database of RRP patient information up to date. So if you haven't completed a questionnaire in the past, please take a few minutes to fill out the form enclosed. If you have previously filled out a questionnaire, you need only identify yourself, mark UPDATE along the top front of the form and answer only those questions where you have new or updated information to provide. Please return the surveys to Marlene and Bill Stern. (See "RRP Web News" article below for information on completing and submitting surveys via the World Wide Web) In addition, RRP families, please review the Patient Directory listings and notify us regarding any corrections, omissions or additions. If you are not included in the directory and would like to be (or vice versa), please notify Bill or Marlene Stern.

Information exchange throughout the support group and the RRP community remains a primary focus of the RRP Foundation (RRPF). In this regard, we very much encourage the use of the Internet and World Wide Web (WWW) as an effective and efficient means of disseminating, sharing and collecting information throughout the RRP community.
The RRPF maintains e-mail lists and a website located at: (http://members.aol.com/rrpf/RRPF.html). We have recently streamlined our site and are in the process of greatly enhancing its functionality. A "Bulletin Board" page has been added for posting happenings relevant to the RRP community, so if you have an announcement related to RRP, please let us know about it by e-mailing us (see page 2 for addresses). Some additional features that will be available shortly from the RRPF website include: 1) the capability of filling out and submitting the RRPF Patient/Therapy Survey and RRPF Practitioner Questionnaire; 2) an expanded library of RRP Newsletter and RRP Reference Service back issues; 3) an RRP personal section which will encourage more communication within the RRP community by allowing patients, parents and others to post their name, e-mail address and other information relevant to their RRP situation; plus 4) a web page devoted to comments, questions and answers. If you have some experience/expertise with the WWW and would like to help us improve our website, please contact Bill Stern.
We also encourage you to explore other sites relevant to the RRP community via cross links from ours. Among these are links to a National Library of Medicine literature search engine, the American Laryngeal Papilloma Foundation and the RRP Website.
The RRP Website (http://www.rrpwebsite.org), which was launched by Michael Green on January 1, 1998, maintains a structure that is quite consistent with the RRPF efforts of encouraging dialogue in the RRP community. Quoting from the opening page of the website, “ It (the RRP Website) is designed for professionals and lay persons alike. It answers many frequently asked questions, and has in depth reviews of treatment and research strategies, a comprehensive list of RRP related sources, a library containing numerous abstracts and reprints of medical journals and a section that hosts RRP related discussions.” The site offers a great deal of information as well as the ability to participate in RRP related discussions.
For those that do not have access to a computer or an internet connection, the local library system generally has computers and internet access available to the general public.

RRP National Issues

A number of proposed scientific and clinical studies involving promising therapies for the treatment of RRP are in need of funding. Government agencies are a very significant source of support for these RRP research efforts. In this regard we continue to urge you to contact your congressional representatives and senators to make them aware of RRP and mobilize their support. For names and addresses of specific key governmental officials see the RRP Newsletter Spring 97 issue.
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The table that follows summarizes information obtained by the Centers for Disease Control and Prevention (CDC) for their RRP National Registry. Site coordinators at 18 medical centers have submitted data on children with active RRP aged 17 years and younger. As of January 22, 1998 there were 311 children in the registry representing 6115 procedures (both clinic and OR).

^* Centers for Disease Control and Prevention
Mail Stop A-15, 1600 Clifton Road, NE..
Atlanta, GA 30333
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RRP Patient Stats

The statistics that follow are based on RRPF questionnaire responses. Although suggestive trends are apparent, there has been no attempt to determine statistical significance, so caution is urged in drawing conclusions from the numbers below.
In addition to these data, results regarding adjuvant therapies are presented on page 4.
Tables 1 - 3 provide a breakdown of the patients in the support group based on sex and age; the sample sizes range from 315 to 368 for tables 1-3.

Table 1. Total number of patients in support group reporting

Table 2. Distribution of patients based on current age brackets and sex

Table 3. Distribution of patients based on diagnosis age brackets and sex

Table 4. Distribution of respiratory papilloma sites of involvement based on responses from 170 patients

Table 5. Birth Statistics from Patient Support Network^*:

Cesarean birth in 16 cases - 258 responses
juvenile onset: 9 of 162 responses
adult onset: 7 of 96 responses
Patient is first born in 133 cases - 240 responses
juvenile onset: 102 of 154 responses
adult onset: 31 of 86 responses
Patient was adopted in 38 cases - 261 responses
juvenile onset: 35 of 165 responses
adult onset: 3 of 96 responses
Mother’s ages - 123 responses (juvenile onset only)
Under 20 = 39
20 -> 25 = 41
> 25 = 43
^* Juvenile onset was defined here as diagnosis age <= 14.

Adjunct Therapy and Protocol Update

The following reports of statistics and clinical research involving RRP therapies, represents a best effort to make an accurate and objective presentation of information from surveys, articles submitted by investigators, personal communications and reference to literature. Where appropriate the RRPF has provided its input in a constructive manner which we hope will best serve the RRP community.

Adjunct therapy survey responses from 250 patients/families have been received. Of those responding, 93 indicated that they have not used any adjunct therapies and 157 responded that they have tried adjunct treatments (many have tried more than one). The most reported therapy was indole-3-carbinol (I3C) with 125 users and next was interferon (IFN) with 67 users responding. The patient/parent assessed impact of some adjuvant therapies is summarized in the table below. In this table the sample sizes include only the subset of adjunct therapy users who indicated some response to a treatment, either some improvement (Improve) or no impact (None). If some improvement is noted, it is further broken down into either a complete response (Comp, i.e., no new growths seen at two typical surgical intervals) or a partial response (Partial).

Table 1. Patient/family assessed impact of adjuvant therapies reported

Some notes regarding the above table:
The therapies are abbreviated as follows, I3C = indole-3-carbinol, IFN = interferon, Acyc = acyclovir, PDT = photo dynamic therapy (using Photofrin), Ribvrn = ribavirin, Retin = retinoic acid or accutane, Mumps = mumps vaccine. In the category of other therapies used, improvement has been noted using the following treatments: Thuja (a homeopathic anti-viral), a mixture of vitamins including vitamin C and vitamin A, ShapeRite immune formula, topical 5-flourouracil (5FU), bleomycin and cobalt. (Please see previous newsletter issues, such as the RRP Newsletter Spring 97 issue regarding side effects for some of these treatments.)
Finally, we continue to remind our readers that these results are based on patient perspectives. Although the survey encourages objectivity and quantitative assessment as much as possible, these analyses cannot replace well designed clinical trials and research. Furthermore, since sample sizes are generally small and no statistical significance tests have been applied to data in the above table, one must interpret these numbers cautiously, especially when considering the natural variability of RRP. However, we do hope that this information can provide some guidance for those patients seeking adjunct therapies as well as those pursuing RRP related research.
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For background information about the impact of indole-3-carbinol (I3C) on estrogen metabolism and how this subsequently may act to reduce the growth rate of respiratory papillomas, see the RRP Newsletters Fall 93 through Fall 94 and Fall 97 for DIM, as well as Bradlow et al., 1996, J. of Endocrinology 150, S259-S265; Newfield et al.., 1993, Anticancer Research 13,337-342

BioResponse announces the availability of "Indoleplex ^TM" and "Indoleplex Flavored Sprinkles". These products are made from pure Diindolylmethane (DIM), a natural dietary indole found in cruciferous vegetables (for more details see the Fall 97 issue of the RRP Newsletter). DIM is a stable substance which arises from the spontaneous "condensation" of Indole-3-carbinol (I3C). DIM is always formed from I3C during digestion or during the fermentation of cruciferous vegetables. Indolplex is shelf stable and more active than I3C.
This product may be especially appropriate for those patients who do not appear to be responding to I3C.
*******************************************

If you are interested in obtaining more information about clinical trials involving I3C, please get in touch with one of the principal investigators as follows:

University of Pittsburgh:
Clark A. Rosen, MD. - (412) 647-2112
University of Tennessee:
Gayle E. Woodson, MD. - (901) 448-7677
Jerome Thompson, MD. - (901) 572-4400

The RRPF continues to encourage research studies involving I3C as an RRP adjunct therapy. In this regard we suggest that those patients who are interested in I3C as an adjunct treatment for RRP become part of a clinical trial. For those who are unable to participate in an I3C trial, but who would like to pursue this therapy on their own, we have been providing information regarding how and where to get I3C products and how much to take. In addition, we continue to supply urine analysis testing information and supplies to RRP patients upon request. Thus far we have had requests for and have mailed out approximately 85 test kits. Along with the kits, detailed instructions are included for collecting urine samples and sending them to Strang Cancer Prevention Center for analysis. In this regard we ask for your patience. These analyses are being performed as part of a research program by a limited number of scientists who depend on various funding sources to cover laboratory expenses. The RRPF will continue to assist their efforts.

How to get I3C Products and How much to take

Indoleplex ^TM products containing DIM are available from:
BioResponse
L.L.C. at P.O. Box 288
Boulder, Co. 80306
e-mail at zeligsmd@sni.net
Indolplex will be available in two forms:
1) Indolplex Capsules - 150 mg - 60 Capsules per bottle Cost is $33/bottle which includes priority mail shipping
2) Indolplex Flavored Sprinkles - 9.0 grams per bottle with directions indicating dosage per teaspoon. At the suggested dosing below, 1 bottle should provide a two-to-four month supply for a child of about 50 lbs.
Cost is $43/bottle which includes priority mail shipping.

Estimated dosages - BioResponse has suggested an approximate dosing of 3 milligram per kilogram (mg per kg) of body weight ( where 1 lb. = .455 kg). This 3 mg per kg dose of Indolplex is equivalent to a 5 mg per kg dose of I3C (or approx. 60%). (Please consult your doctor, especially for young children.)

I3C may be purchased from:
THERANATURALS Inc.
PO. Box 344
Orem UT 84059-0344
(801)224-8893 - Telephone; (801) 226-6064 - Fax
e-mail: www.theranaturals.com
[A credit card number is requested by phone, fax or e-mail]

Theranaturals is selling I3C in capsule form, each capsule will be guaranteed to contain 100 milligrams of I3C. Each bottle will contain 100 capsules.
Pricing as of 12-1-97 (which includes shipping via USPS priority mail) : $40.00 for one bottle; $110.00 for a package of 3 bottles
add $16.00 to above prices for Fed X shipping.
Important: For this pricing you must let Theranaturals know that you are an RRP patient/family and they will assign you a special customer number.
Approximate dosing information is based on preliminary results of Dr. Leon Bradlow's estrogen metabolism studies, as follows:

Estimated dosages - Adults approx. 400 mg, Children (under 50 lbs) 100 - 200 mg (Please consult your doctor)

The digestive process is important to properly break down I3C (see RRP Newsletter - Spring 94 ). In this regard, try to avoid taking antacids and it is probably best to take I3C at meal time. I3C is unstable in heat and light, so the best way to extend the shelf life is to keep I3C in a cool dark location such as the refrigerator.

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The Department of Otolaryngology at Long Island Jewish Medical Center is continuing our studies on the use of photodynamic therapy with the new drug MTHPC. At this time there are a total of 12 patients enrolled. We have seen real improvement in all of the small number of patients (4) who have been treated with this new protocol where we have follow up of 6-12 months. One patient with severe disease is free of papilloma at 15 months, showing steady reduction in disease severity beginning at 6 months. Another patient has only tiny residual regrowth of papillomas after 15 months. One patient, at 9-12 months, is disease free and the other in this follow-up period has shown marked improvement. It appears that the improvement takes some time, no effect at 3 months, then beginning to improve by 6 months. We are following the patients every three months for a minimum of 1 year, with pre-treatment evaluations in the 6 months before PDT for comparison purposes. In all cases, the period of photosensitivity has not exceeded three weeks.

We are actively recruiting patients with moderate to severe disease (requiring at least 3 surgeries in the past year) who are willing to have the MTHPC PDT or are willing to serve as controls. In either case, patients need to be evaluated every three months for a total of 18 months, with carbon dioxide laser removal of any papillomas at each evaluation. We will provide a stipend to each patient who participates as either a PDT patient or as a control, and will provide travel money for the evaluations. Interested patients should contact either:

Dr. Allan Abramson or Dr. Mark Shikowitz
Department of Otolaryngology
Long Island Jewish Medical Center
New Hyde Park, NY 11040
718-470-7550

[For additional discussion of PDT see the Fall 1996 and Spring 1997 RRPF Newsletter.]
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The RRPF continues to follow the mumps vaccine as an adjunct treatment for RRP. The therapy involves local injections of the mumps vaccine into the site of the papilloma after laser removal of the papilloma (see details of the protocol developed by Dr. Nigel Pashley in the Fall 1996 RRPF Newsletter). To date, a controlled study has not been conducted on this protocol, so this report is based on anecdotal information provided by doctors and patients.
The spring 1997 RRPF Newsletter reported that Dr. Pashley had injected 13 patients with the mumps vaccine and 9 patients had a complete response. Since the Spring 1997 newsletter, the total number of patients injected has increased to 19 with a response rate of 11 patients. As noted in prior RRPF Newsletters, the protocol is for laser removal of the papillomas and then an injection of the mumps vaccine into the site of the removed papillomas. Each time the patient returns for laser removal, the site of the removed papillomas is re-vaccinated and, generally, within 3-4 injections, a change is noted in the size of the papilloma and the rate of recurrence. Since a number of injections can be required (generally 3-4) to induce change, it raises questions as to the classification of the newly treated patients. We do not know if they are non-responders or, if in each individual case, they have not received enough of the vaccine to induce the desired changes. While this treatment is encouraging, we are also aware of one patient in the above group who has received a number of treatments and no change has been noted.

The RRPF will continue to follow this protocol and invites other practitioners and patients to report their experiences to us. Dr. Pashley can be contacted at the address listed below for more information on the protocol he has developed:

Dr. Nigel Pashley
1601 East 19^th Avenue
Suite 5500
Denver, CO 80218
Phone: 303-839-7900
Fax: 303-839-7930

......................................................................................

I have had several lengthy discussions with Dr. Wellens from Belgium, who has the most experience using HPMPC for RRP. In addition, I have reviewed the only printed manuscript regarding his results. I also have preliminary experience using this treatment modality for severe RRP.

Dr. Wellens is very encouraging regarding the potential to use HPMPC for the treatment of RRP. He states that he has had many complete cures of patients with RRP using HPMPC, even only using 3-4 injections.
A critical review of his manuscript, that describes his initial success, reveals that very few patients have actually been cured of their disease. In addition, many patients required every other week injections prior to clearing their disease. The report also describes several patients who initially were cleared of their disease and stopped receiving injections and then recurred many months later. These patients were designated by Dr. Wellens to be a cure with a late “touch up”.
I have used HPMPC in two adult patients, both with extensive supraglotic and glottic RRP that had failed I3C. Neither of the patients have had any side effects of the injections. Each patient has received injections of HPMPC in a concentration of 2.5mg/cc every other week under general anesthesia. Both patients had initial dramatic response to the first three injections, less RRP seen with each injection. The first patient I treated had some residual RRP in his larynx that I could not get rid of with the injection of HPMPC despite his receiving a total of 9 injections. The second patient has had three injections and is doing quite well but all her disease is not yet gone. Interestingly, she has developed a glottic web from where her bilateral RRP was injected. Presumably her RRP went away and a web formed in similar fashion as if she had surgical removal.
What does all this mean? It is too early to draw any preliminary conclusions, but it appears that HPMPC is initially quite effective but that it may not cure RRP. Would repeated injections of HPMPC be better for patients than repeated surgery? Maybe, it will depend on the necessary interval of the injections. Further updates to follow.

[For additional discussion on Cidofovir, see the Fall 1997 RRPF Newsletter.]

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Research Activities Update

Results from a recently submitted paper by DaZhi Chen and Karen Auborn of Long Island Jewish Medical Center, suggest that fish oil containing omega-3-fatty acid might provide an adjunct treatment for HPV caused disease, including RRP. In a study supported by the National Cancer Institute, the omega-3-fatty acid, docosahexaenoic acid (DHA) was found to inhibit the growth of cells with an HPV pathology (both benign and precancerous) in cell culture experiments. Growth of normal cells was not affected. In addition to these encouraging in-vitro results, there may be an added in-vivo benefit of enhanced immune activity associated with fatty acids (Hwang, 1989). Since fish oil is a readily available and easily consumed product, we will anxiously await the results of proposed animal studies.


RRP Perspective

[The following was addressed to the RRPF Network by Dr. Keerti Shah. Dr. Shah recently joined the RRP Scientific Advisory Committee.]

I am glad to join the Scientific Advisory Committee of the RRP Foundation. As a virologist interested in epidemiology and disease causation, I look forward to working with all of you toward the goal of control and prevention of RRP. It should be possible to reduce the number of new cases of RRP, since we now know how the infections are transmitted. Treatment of maternal genital warts during pregnancy and cesarean delivery of infants at high risk of developing RRP (those born to mothers who have genital warts at delivery) should reduce the number of new cases. I also think that in the near future, new treatment options for genital warts will be tested and that therapies successful in controlling genital warts may also be effective in controlling RRP. I am sure that working with colleagues in the RRPF and keeping in touch with what is of concern to our members will make the scope of my own research broader and more relevant.
Thank you for inviting me to join the RRPF.

Patient Profile

[The following profile was written by Christine Hartman, the mother of RRP patient Lauren Ann Hartman Davis].

The sweetest sound to my ears is my daughter’s voice the day after her surgery. My daughter, Lauren, is six years old and was diagnosed with RRP at nine months old. After her surgeries, her voice is soft and sweet and you hear a lot of it due to the fact that she likes the sound of it.
When I was 21 years old (and thought I knew everything), I found a lump which I thought was cancer. I had my mom take me to my gynecologist, who, to my horror, explained to me I did not have cancer but had a venereal disease. I had contracted genital warts from my steady boyfriend who did not know that he had them.

I was told once they were removed, they were gone. I could break out again or never get another one. I was also told that I had the virus and could pass it on to any sexual partner.
I had a couple of level II ultra sounds done because the baby’s stomach was enlarged. The specialist believed that my child would just like to eat. Big stomachs probably just ran in the family, I was told. In between ultrasounds and worrying about having a healthy baby, we got married. Everything was moving along quickly and I worried about everything.
My mother had a friend who was a nurse. She didn’t want us to get upset, but told us I should not deliver my baby vaginally. When I questioned my doctor, he told me it would be okay. What they knew was, unless there were genital warts present, I could deliver vaginally and the baby and I would be fine.
Lauren was born December 12, 1991 at 6:50 a.m. She was 6 pounds and 2 ounces. Against my mothers wishes, she was born vaginally. The perfect baby.
I had uneasy feelings about Lauren from the beginning. I questioned my mom who agreed things didn’t look right. Her skin tone looked gray and she didn’t cry. Around her lips and forehead the skin color often looked blue. When I watched her sleep it looked like she would hold her breath. By the time the nurses would come, she was fine. They never saw her hold her breath (or as we later found out, she was not breathing). They told me to relax, I was just a nervous mother.
Her pediatrician examined her and made an appointment to see us for a physical in two days. The pediatrician told me everything looked great and that I had a health baby.
My mother made me a promise to spend the first night at home with Lauren and I. I thank God she was there every time I think back on that night. Lauren was only 24 hours old when we were released from the hospital. My mom was cleaning up around my house after company left and Lauren was in my arms when she stopped breathing. My mother did CPR and my sister called 911. We were then rushed to the nearest hospital. When the ambulance arrived, Lauren was breathing on her own. By the time we got to the hospital she was fine. The doctor told me she probably choked on her formula. After I explained to the doctor she had not eaten in eight hours and also explained when she sucked on her bottle it came back up at the same time it went down, he then examined her closely and agreed something was wrong. He then sent us back to the hospital.
When we arrived and were put in a normal room, Lauren stopped breathing and was rushed into intensive care. The next morning, after more tests were run, we found out Lauren’s esophagus was not attached to her stomach. She was too little to undergo surgery so they had to build her strength to perform the surgery.
One week old, Lauren underwent her first surgery. Everything went fine except for the little hole they put in her stomach when sewing her up. They then had to repair the hole.
She spent one more week in intensive care. She was then moved into a normal room, which was the first time I was allowed to spend the whole night asleep with her. She ran a fever and had to spend an extra night in the hospital. She came home with an apnea monitor on Christmas Eve. She was put on Zantac and other stomach aids for her reflux. She was monitored closely by all of her doctors. My days were spent between medical offices and keeping journals on her medicines, foods, bowel movements and apnea monitor.
When she was around five to six months old, she had to see a heart doctor due to a hole in her heart. After tests were complete, it was decided that the hole had closed on its own.
Through all of this, Lauren was the happiest baby you ever saw. At the age of four months, she would sing (to me that is what it sounded like, but to anyone else it was yelling) to the music. She was always smiling and was easy going.
Then, when she was almost seven months old, Lauren developed a cold. They put her on amoxicillin. She didn’t seem to get better. Two weeks later they switched the medicine. This went on for a couple months. It got to the point that when she cried I could not hear her. The only way you knew she was crying was due to the tears she had in her eyes.
When she was nine months old, our pediatrician referred us to an ENT doctor at St. John’s hospital. He was an adult and children’s doctor, but was going on vacation. He believed she needed immediate care and referred us to Dr. Stith at Cardinal Glennon Hospital. Dr. Stith diagnosed Lauren with RRP. He then admitted her into the hospital immediately and performed surgery the next morning. She spent one more day in the hospital. They explained all the details of the disease and became our second family.
After finding out about the disease, I discovered that I was pregnant with my second child. My gynecologist informed me that my insurance company would not pay for a Cesarean Section, due to the fact that it is not proven Lauren was infected by me. I was beside myself. My daughter was undergoing surgeries every two to three weeks and I was told that my second child was to be born vaginally. I prayed every night for God to help me out of this mess. The week before my second daughter (who also had an enlarged stomach) was born, she turned the wrong way and I had an emergency Cesarean.
She was born January 2, 1993 and was six pounds, 12 ounces. She was also put on medicine for her stomach, but has shown no signs of RRP.
They say what doesn’t kill you makes you stronger. I now believe that. The guilt I feel for being so naive about sexual disease is horrible.
Lauren was told a couple of months ago that it looked like she was in remission, but it was not true. Her surgeries are six weeks apart right now. She has tried interferon, which helped spread the surgeries out to six to eight weeks instead of the two weeks she had been undergoing.
She is six years old and will start school this year. She is very excited to ride the school bus. She is in preschool right now and is doing well. The other children sometimes ask about the hoarseness in her voice. The teachers have been great and understanding.
For someone who has to go through all of this, Lauren is a great kid. Her father and I have divorced since. She and her sister handled it well. Both of us have moved on to other relationships and try to get along for the kid’s sake. She now has two stepbrothers, one older and one younger than her.
We just take it day by day. We are also praying for a cure, as we know every family affected by this disease does. I know God has carried us through this. Without my God, family and friends, I don’t know how we could have gotten this far.

A request for additional RRP research funding

Fourteen year old Alex Wright, whose father is an RRP patient, has put forth his perspective on RRP in the form of a petition calling for an increased level of funding for RRP related research. Please see his letter and petition enclosed.