Recurrent Respiratory Papillomatosis

NEWSLETTER

Vol.5 No.2 An RRP Foundation Publication 1996 Fall

_________________________________________________________________________________________________________

!!!!!!!!!!!!!!!!!!!!!!! CHANGE OF ADDRESS !!!!!!!!!!!!!!!!!!!!!!!

Bill, Marlene and Lindsay Stern are moving, all RRPF correspondence to them should now be addressed to:

P.O. Box 6643

Lawrenceville, NJ 08648-0643

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Contents

Adjunct Therapy Survey Update - p. 4

indole-3-carbinol - p. 4-5
Mumps vaccine and RRP - p. 5

From the Editors

The RRP Newsletter is vital to our support services and networking efforts. We welcome your comments and suggestions. Your feedback will be very helpful in improving this publication. We continue to seek people from the RRP community to actively participate in the RRPF and the RRP Newsletter. This includes practitioners, researchers, patients and families. If you have any interest in this regard, please contact any of the directors or officers (see page 2 for addresses). Additional help is needed to continue and build on the efforts of the RRPF. Once again we appeal for your assistance. Specifically:
1) We need at least one additional volunteer to help us maintain and expand our informational databases.
2) We need people to help us gather information, write articles and serve as editors for the RRP Newsletter.
3) Additional help would also be welcome in conducting literature searches and coordinating RRP Medical Reference Service issues.

If you would like to help in any way, please contact me at the address listed on page 2.

Thank you.

Bill Stern

RRPF Publication and Subscription Policy

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]

We are most grateful to all those individuals, medical professionals and corporations who have supported the RRPF. In this regard we would like to take this opportunity to acknowledge special grants to the RRPF from the American Laryngeal Papilloma Foundation (ALPF) and the employees of Lockheed-Martin Marietta Corporation. 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: 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.
If you are not registered with the RRPF, please do so by completing the Practitioner Questionnaire enclosed.

RRPF Officers, Directors & Advisors

Marlene Stern
President
P.O. Box 6643
Lawrenceville, NJ 08648-0643
(609) 890-0502
mstern@pucc.princeton.edu

Bill Stern
Treasurer and Director
P.O. Box 6643
Lawrenceville, NJ 08648-0643
(609) 890-0502
wfs@gfdl.gov

Henry Woo, Esq.
Secretary
2600 Virginia Avenue, NW., Suite 301
Washington, DC. 20037
(202)965-4150
hkww@aol.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
7107 Georgia St.
Chevy Chase, MD 20815
(301)652-6826

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

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

Kathleen Sullivan, RN, Children's Hospital of Boston

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Annual Meeting of the American Academy of Otolaryngology - Head and Neck Surgery

Washington, DC Convention Center

September 29 - October 2, 1996

Representatives of the RRPF will be there, at Booth #682. If you are in the neighborhood, stop by and see us.

RRP Remission News
by Judith Thompson and Bill Stern

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

Jim from North Dakota, who is now 43, has not had surgery since August of 1995. Prior to that he had gone through a period with sugeries about every 5 months. In December of 1995 he began I3C and a visual check earlier this year revealed no papillomas.

Rita from Pennsylvania last had surgery in November of 1995. By the time she was 21 months she had undergone 10 surgeries. She is now nearly 3 and for more than a year has been drinking copious amounts of cabbage juice, with some use of I3C powder and a 6 month period of Acyclovir.

Ralph from Pennsylvania now 69 years old, has not needed surgery for 14 months. In the previous two years he had 4 surgeries. He started taking I3C the day after the last surgery.

Others still in remission include: Ariel from California, now 5 years old; Steph from Florida, age 23; Jeff from Illinois, age 49; Emily from Michigan, age 8; Leah from New Hampshire who is now 16 1/2 years old; Lindsay from New Jersey, now age 7; Melissa from New York, who is 7; Kaitlyn from Tennessee at age 4; and Smokey from Virginia, now age 25.

If you feel that you or your family member is in remission and would like to share this information with the RRP community, please contact:

Judith Thompson

3184 Eutaw Forest Dr.

Waldorf, MD 20603 (310) 843-6378

email: jthompson@gpo.gov

RRP Network News

Our international support network has grown to approximately 350 respiratory papilloma families. Patients range in age from 2 to 79 years and are located in 41 states, the District of Columbia, two Canadian provinces, the United Kingdom, Macedonia, Croatia and Morocco.

Since its introduction with the Spring 1996 issue, we have received 1996 patient/therapy questionnaires from approximately 50 families in the support group. Our thanks to all who have taken the time to fill out this questionnaire. If you haven't done so (or would like to update information) please take a few minutes to fill out the forms enclosed. Please note that Dr. Kashima has requested that 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. Please return them to Marlene and Bill Stern. 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, please notify Bill or Marlene Stern.

Communication and information exchange throughout the support group and the RRP community remains a primary focus of the foundation. The RRPF maintains an account with America-On-Line (AOL) and can arrange for you to have a limited amount of free time on AOL for RRP related communications; just get in touch with Bill Stern. The RRPF maintains a page on the World Wide Web (WWW); the address is (http://members.aol.com/rrpf/RRPF.html) . Our page is cross linked with the WWW home page of the University of Alabama, Birmingham, Department of Biochemistry & Molecular Genetics, which will link information about the international papillomavirus community plus other HPV related material. (http://www.bmg.uab.edu), a papilloma page created at Tufts University by medical graduate student John Strasswimmer (http://WWW.healthsci.tufts.edu/microbiology/strass/JSpage.HTML) and a self-help/support group web site with the capability of real-time chatting (http://www.transformations.com). In the future we are proposing to include a directory of internet addresses (and WWW home page sites) for RRP patients/families, doctors, researchers and others with an interest in RRP. Please let us know if you would like to be included.

RRP National Issues

Development of an RRP National Registry is now underway. It is being established by Dr. Lori Armstrong at the Centers for Disease Control and Prevention, the following progress report was provided by the Centers for Disease Control and Prevention (CDC).

CDC, Task Force Collaborate on Start-Up of Pediatric RRP Registry

by

Lori Armstrong, Ph.D.*

Last year, the Centers for Disease Control and Prevention (CDC) accepted responsibility for designing, coordinating, and maintaining a registry for pediatric recurrent respiratory papillomatosis (RRP).

The overall objective of the registry is to gather population-based data to characterize this disease in the United States. The initial aims of the registry are to
1) estimate the incidence, prevalence, and mortality rates for pediatric RRP in selected populations; 2)describe the clinical course and morbidity of pediatric RRP; and 3) facilitate multisite collaborations.

RRP is an often debilitating condition caused by infection with human papillomavirus. The disease is characterized by hoarseness or voice change and the prevalence of lesions (papillomas) on the vocal cords and sometimes in the trachea, lungs, and oral cavity. In severe cases, the lesions can tend to result in obstruction of the airways and must be surgically removed. Because the lesions tend to recur, patients may require repeated surgeries. RRP affects people of all ages, but children younger than 5 years of age appear to be at greatest risk for the disease. An estimated 2,500 new cases of pediatric RRP occur each year in the United States, and approximately 5,000 children require surgery for RRP at least once every 3 years, according to the American Society of Pediatric Otolaryngology and the American Bronchoesophagological Association Joint Task Force on RRP.

"RRP is an important emerging infectious disease, yet regrettably there are no accurate data about its incidence and related risk factors," notes William C. Reeves, chief of CDC's Viral Exanthems and Herpesvirus Branch. "This project should help to improve the prognosis of RRP by providing a greater understanding of its occurrence, natural history, and response to treatments."

During the past year, CDC's efforts have been directed toward developing registry data forms to reliably collect standardized information, that can be used by clinicians and public health programs. Dr. Lori Armstrong (CDC's principal investigator for RRP) has obtained supplemental funding from the National Center for Infectious Diseases to develop and implment the registry. Dr. Armstrong and otolaryngology nurse Mary Reichert have developed chart abstraction forms and piloted final versions of the forms on all active cases of pediatric RRP at Egleston Children's Hospital, Emory University, Atlanta. They have also redesigned parent interview forms to conform to standard survey questions. Finally, CDC's Human Subjects Review Committee has approved the Registry.

In May 1996, Dr. Armstrong presented a progress report to the RRP Task Force at the Combined Otolaryngology Spring Meeting in Orlando, FL. The Task Force recommended that the registry be simplified and the amount of information collected be reduced. CDC is currently implementing the Registry in two phases. The first phase will obtain data on all active juvenile onset RRP patients in Atlanta, GA; Seattle, WA; and the state of Iowa. Results from this phase will allow accurate population-based estimates of RRP incidence, prevalence, clinical course, and mortality.

CDC has established collaborations with several academic and medical institutions to complete this phase and data collection for the Atlanta portion of the study is almost complete. Dr. Armstrong hopes to present preliminary data at the meeting of the RRP Task Force in September.

The second phase will implement the registry at the 23 hospitals affiliated with the RRP Task Force. CDC and Dr. Craig Derkay, the head of the Task Force, are currently reviewing data collection instruments and are involved in discussions concerning operational details for the second phase.

* Division of Viral and Rickettsial Diseases,

Centers for Disease Control and Prevention

Mail Stop G-18, 1600 Clifton Road, N.E..

Atlanta, GA 30333

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

A successful RRP registry will require continued funding. In addition, 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. Regarding specific CDC funding of a National Registry for RRP, ask them to contact :

The director of CDC:

David Satcher, MD, Director

Department of Health and Human Services

Public Health Service

Centers for Disease Control

Atlanta, GA 30333

The director of the National Center for Infectious Diseases:

James Hughes, MD, Director
National Center for Infectious Diseases

Centers for Disease Control

Atlanta, GA 30333

Others for representatives & senators to contact:

The contract officer at NIH.:
Dr. Penelope S. Hitchcock
Chief, Division of Microbiology & Infectious diseases
National Institute for Allergy & Infectious diseases
Solar Bldg., Rm. 3A24

6003 Executive Boulevard
Bethesda MD 20892-7630

Phone: (301) 402-0443; Fax: (301) 402-1456

The director of the FDA:
David A. Kessler, MD
Commissioner of Food & Drugs
Food & Drug Administration
Park Lawn Bldg., Room 1471
5600 Fishers Lane
Rockville, MD 20857

Director of Nat. Inst. for Allergy & Infectious diseases:
Anthony Fauci, MD

Assistant Secretary for Health:
Philip Lee, MD

RRP Patient Stats

The statistics that follow are based on RRPF questionnaire responses. 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 - 4 provide a breakdown of the patients in the support group based on sex and age; the sample sizes for tables 1-3 range from 280 to 295.

Table 1. Total number of patients in support group reporting

Females - 143
Males - 152

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

Under 10 - Females = 71, Males = 57, Total =128
10-20 - Females = 24, Males = 24, Total =48
20-30 - Females = 12, Males = 14, Total =26
30-40 - Females = 11, Males =10, Total =21
40-50 - Females = 11, Males = 20, Total =31
Over 50 - Females = 9, Males = 17, Total =26

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

Under 10 - Females =107, Males = 91, Total =198
10-20 - Females =5, Males = 3, Total =8
20-30 - Females = 15, Males = 13, Total =28
30-40 - Females = 3, Males =14, Total =17
40-50 - Females = 7, Males = 15, Total =22
Over 50 - Females = 2, Males = 5, Total =7

Table 4. Birth Statistics from Patient Support Network:

Thus far approximately 75 medical centers/practices who are treating RRP patients have registered with the RRPF by completing practitioner questionnaires. They account for approximately 1462 patients, 853 pediatric and 609 adults.

Adjunct Therapy and Protocol Update [need to 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.

Adjuvant Therapy Survey Update

by Bill Stern

Adjunct therapy survey responses from 75 patients/families have been received. Of those responding 21 indicated that they have not used any adjunct therapies and 54 responded that they have tried adjunct treatments (many have tried more than one). The most reported therapy was indole-3-carbinol (I3C) with 31 users and next was interferon (IFN) with 21 users responding. The patient/parent assessed impact of some adjuvant therapies is summarized in the following table.

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

I3C

IFN

Acyc

PDT

Ribvrn

Retin

Mumps

Others

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. In the category of other therapies used, improvement was noted by 3 patients (or parents) using, respectively, mumps vaccine (see page 5 for more details), topical 5-flourouracil (5FU) and Thuya (a homeopathic anti-viral). One patient reported no impact when, a few years ago, they were injected with extracts of their own papilloma in an attempt to elicit a response to an autologous vaccine.

As indicated in the RRP Newsletter issue for the Spring of 95, there was significant variation in dosages, brands and types of IFN used. (Most clinical trials have been with interferon-alpha. Additional controlled studies of interferon-beta, interferon-gamma and imiquimod, an inducer of interferons, are still needed.) Almost all IFN users reported some side effects, with a low grade fever being the most common complaint, and headaches, nausea and fatigue also being reported. I3C does not generally produce any obvious side effects, although there was one report of some minor stomach upset upon starting the therapy and two reports of temporary dizziness when a significant overdose was consumed.

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. We do hope that this information can provide guidance for those patients seeking adjunct therapies as well as those pursuing RRP related research.

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Indole-3-carbinol Update

by Bill Stern

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 as well as Newfield et al., 1993, Anticancer Research 13:337-342

I3C Trials at University of Pittsburgh, Children's Hospital and University of Tennessee

As reported by Dr. Clark Rosen, at least 60% of the RRP patients enrolled in the trials at Univ. of Pittsburgh and the University of Tennessee continue to show a positive response to I3C.

If you are interested in obtaining more information about these clinical trials, 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

RRP studies at University of Alabama (UAB)

A scientific study involving I3C and HPV is now underway at the University of Alabama. This investigation includes a collaborative approach involving the Department of Biochemistry and Molecular Genetics, the Department of Pediatric Otolaryngology and the Department of Obstetrics and Gynecology. In addition to a clinical assessment relating I3C to papilloma growth, a basic science approach will attempt to answer the "How" and "Why" of I3C via analyses of blood and tissue samples, as well as parallel experimentation with the epithelial raft culture system in the lab of Tom Broker and Louise Chow. ( Initially, participation in this study has been limited to those being treated at UAB.)

Another proposed research project at UAB involves the possibility of testing a drug called HPMPC on RRP patients with pulmonary involvement.

RRPF I3C Research Coordination Efforts

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 and how much to take. In addition, last fall we began supplying urine analysis testing information and supplies to RRP patients upon request. Thus far we have had requests for and have mailed out 35 test kits. Twenty kits have been sent to Strang Cancer Prevention Center for analysis and two patients have since decided to enroll in a clinical trial. To date, urine assay results have been received for 15 of the 20 sets of samples submitted and this information has been passed along to the patients and/or families. 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, in this regard the RRPF has provided a small grant to assist their efforts .

How to get I3C and How much to take

3C may now be purchased from:

THERANATURALS Inc.
PO. Box 344
Orem UT 84059-0344

(801)224-8893 - Telephone and Fax
[They are able to take orders by phone]

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 (which includes surface UPS shipping) : $35.00 for one bottle; $95.00 for a package of 3 bottles
add $10.00 to above prices for Fed X shipping.

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)

* [ Over the past 6 months several changes have taken place. First was the transition from bottles of powder to capsules, which in general made dosing easier. However, these I3C capsules contained "filler" in addition to the 100 mg of I3C. Although the filler material in no way should have compromised the effectiveness of the capsules, its very sticky consistency presented some "tactical" problems, especially for children who could not swallow pills. Recently, the I3C capsule processing has been refined by Parish Chemical / Theranaturals so as to eliminate the filler and to produce a somewhat "purer" final product. The end result is a capsule that contains at least 100 mg of I3C, that appears nearly white in color and has a flaky consistency. If you have any questions or comments on this product let us know.]

The RRPF will continue to provide urine sampling and mailing kits, primarily to those people not enrolled in an I3C trial who would like to have their urine tested for the ratio of estrogen metabolites. Contact Bill Stern for more details.

A final I3C note: We want to remind all those patients currently taking or proposing to take I3C, that the digestive process is important to properly breakdown I3C (see RRP Newsletter - Spring 94 ). In this regard, try to avoid taking antacids and it would probably be best to take I3C at meal time.

Mumps Vaccine Therapy for RRP - an Update

by Bill Stern

The Spring 96 issue of the RRP Newsletter suggested the possibility that mumps vaccine might help to slow (or stop) the growth of respiratory papilloma. This was based on anecdotal information obtained from Dr. Nigel Pashley and mothers of two of his patients.

Dr. Pashley has kindly provided the RRPF with details of his mumps vaccine/surgical protocol. We quote him as follows:

"The way we have applied this is to remove the papillomas with a laser and remove as many papillomas as is possible without risking scarring in the anterior part of the larynx. Once the papillomas are removed, we inject Mumpsvax, which comes as a vial of powdered material. This is reconstituted by mixing the powder with 2 cc of normal saline. We then draw this mixture into a 3 cc syringe using a laryngeal injection needle (purchased from the Pilling Company). We fill the needle (which takes about 1 cc) and then inject into the base of the papilloma areas as much Mumpsvax as can be tolerated, without creating undue airway obstruction. In a child of about 5 years old, this would be approximately 1/2 to 1 cc total injected on both sides.

We have also injected the areas where papillomas have been deliberately left in place. Each time the patient returns for laser surgery, this treatment has been applied and usually within 3-4 injections, we see a dramatic change, not only in the size of the papilloma, but also in their rate of recurrence."

Thus far Dr. Pashley has treated nine RRP patients and seven of them are in "remission". Of the seven in remission, one patient responded after only a single injection, while the remainder have required up to five injections. The two who are not in remission have shown some partial response with an approximate doubling of their surgical intervals.

Dr. Pashley's protocol is now being tried by at least one other surgeon (Dr. Parson's at the University of Missouri).

Dr. Pashley welcomes other ENT surgeons to try this procedure and asks to keep in touch regarding results. He can be contacted at:

Nigel Pashley, MD
1601 East 19th Ave.
Suite 5500
Denver, CO 80218
phone: (303) 839-7900
fax: (303) 839-7930

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

The RRPF invites patients and doctors to learn more about these and other experimental therapies. Before entering or recommending any experimental trial, we suggest that you make inquiries regarding details of the protocol, all possible side effects, expected impact on papilloma growth, etc. The applicability of any treatment must be assessed within the context of each individual situation. The information given above is intended to provide some guidance.

RRP Patient Profile

[In this issue we are pleased to let Andrea Behr share with us some of her RRP experiences, insights and perspectives. Andrea is currently an undergraduate attending Colgate University.]

As I began to think about writing my college essays, it soon became clear to me what my topic should be. There is something about me that has shaped my entire life but can only be described through an essay. I have had a rare disease called laryngeal papillomas, since I was four months old, and because of the nature of the disease (small bumps on my throat and vocal cords), I have whispered all my life.

For seventeen years I have found myself forgetting that I am different from other people in one very specific and obvious way - they have a voice and I do not. My small elementary school was primarily responsible for this because it provided me with an environment in which no one ever questioned my ability to do something just as well as others. For instance, in eighth grade I had a speaking part in our class play, something that today seems more unusual than it did back then. Like most people who begin the college admissions process, I was forced to review my failures and accomplishments more closely than ever. As I did this, I found myself wishing that I could have sung in the recent holiday assembly, or acted in the fall play along with many of my friends. I realize, however, that for all of these things I might have done, there are many other aspects about me that can substitute for these losses. I am just as talkative as my friends, I ask just as many questions in class as other students, and I am just as optimistic about my future as anyone else with a voice.

My condition has forced me to undergo approximately sixty operations at The Children's Hospital of Philadelphia. My friends and family have always been very supportive during and after these operations, but I am the only one that can understand the awful feeling in the pit of my stomach as I enter the hospital. Although I have always dreaded my own visits to the hospital, which are now less frequent, I am surprisingly interested in the many functions and responsibilities involved with the hospital, including the lives of physicians, nurses, and administration. To satisfy this interest, I decided to volunteer last summer at my hospital. No one understood why I would want to return to a place I had unwillingly been so many times, but I felt a need to be on the other side -- a caregiver instead of a patient. I worked with babies in the Infant Transitional Unit of the building, holding and feeding them, and cheerfully talking to their parents. Indeed, this experience did not quell my interest in children and hospitals, it actually opened the door further.

When I first meet someone, I always hope that he or she would listen to what I am saying and not comment upon my whisper so that I will not have to explain my voice. Of course this never happens, but I have learned that a person I end up liking is the person who immediately accepts me as I am and for who I am. People are often surprised, first, that I do not have laryngitis and second, that I like to talk, but I am glad that the people who eventually get to know me seem to forget about my voice. Now that I am older, I am often asked what I want to do when I get out of college. I have learned to recognize that my life has been and will be forever affected by my handicap and that because of this my career options may be different from others, but I have also recognized that if I continue to expect as much from myself as I can (and always have), my life may not be all that different.

Andrea Behr

A Comment on RRP and Asthma

by Bill Stern

As implied by a query in the 1996 RRP patient/therapy questionnaire, some experts suspect the possibility of more than a coincidental relationship between RRP and Asthma (and perhaps some other respiratory ailments as well). In this regard, your questionnaire responses may help to provide some statistical clarification.

Whether or not a relationship exists, an interesting corollary has been raised by an adult member of the RRPF support network, Susan Bates. Susan has been coping with both RRP and Asthma for many years. After noting some improvement in her RRP (presumably in response to I3C), it recently became more aggressive again. Susan has anecdotally related this recent resurgence in her RRP with her need to resume taking a cortisone based medication to keep her Asthma under control. She has now stopped her Asthma medication and will keep us posted as to whether there is a also an abatement in her RRP. We are curious to know if any one else has had any similar experience. If so, please contact either Susan Bates or Bill Stern (address info. contained on insert).

RRP FOUNDATION ADDRESS CHANGE

New Address is:

Bill and Marlene Stern
RRP Foundation
P.O. Box 6643
Lawrenceville, NJ 08648-0643

(For the time being use the same phone number:
609-890-0502)