Recurrent Respiratory Papillomatosis

[Marlene J. Stern]

I am posting a copy of the Fall edition of the Recurrent Respiratory  
Papillomatosis Foundation newsletter.  If you would like to subscribe to a hard  
copy, please send email to me at mstern at lindsay.princeton.edu.  Please,  
virologists, please find a cure for RRP.  We know first hand how devastating  
this disease can be.  Our three year old daughter suffers from RRP and has had  
11 surgical procedures thus far.  Marlene Stern   mstern at lindsay.princeton.edu

 
Recurrent  Respiratory  Papillomatosis 
NEWSLETTER

Vol.2 No.2	An RRP Foundation Publication	1993 Fall

________________________________________________________________________

>From the Editor

In this issue of the RRP Newsletter we discuss 
contagion of RRP in social and family settings.  Can this 
disease be acquired through casual contact? 

Some additional highlights include: 
*	In the Research News section, a discussion of some 
of the theory of why cruciferous vegetables may help 
slow papilloma growth, including some guidance and 
"recipes" for those using this therapy.
*	Featured in the RRP Patient Update, is 36 year old 
Christina Lancaster, who has lived and coped with 
this disease since early childhood.  She offers some 
interesting and insightful perspectives on RRP.
*	In a new section, RRP Practitioner Perspectives, we 
invite those doctors and nurses treating respiratory 
papilloma patients to publish their personal and/or 
clinical view of this disease.
*	Another new section, RRP Patient Gallery, has been 
added to allow us to "meet" more of the support 
group.  Pictures of RRP patients and brief narratives 
will be printed as space permits.	

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 are now offering an RRP medical reference 
service.  Upon request, we will provide RRP related lists 
of medical references updated semi-annually.  All we ask 
for is an annual tax deductible donation of $25 or greater 
to the RRP Foundation.
We are asking for your help in supporting this 
newsletter and other RRP support services.  Although all 
of our time is donated strictly on a volunteer basis,  it 
costs money to publish and distribute this newsletter, to 
maintain a long distance telephone network, to run 
periodic medical literature searches, and to carry out 
additional support and awareness activities .  Any 
donations from individuals or from the business 
community will be very much appreciated. We have been 
granted a 501(c)(3) tax exempt status by the IRS. Tax 
deductible contributions may be made to:
RRP Foundation
50 Wesleyan Drive
Hamilton, NJ 08690 
                             Bill Stern


IS RRP CONTAGIOUS?
by Bill Stern

The fact that recurrent respiratory papillomatosis 
(RRP) are far from household words, speaks to the non-
contagion of this disease
I believe most otolaryngologists agree that RRP is 
non-contagious in social and family settings.  However, 
there appears to be a significant amount of concern 
regarding the contagiousness of this disease among many 
who are less knowledgeable.  For example:

*	We personally experienced some difficulty with a 
daycare situation.  A person who had been baby 
sitting for our daughter before she was diagnosed with 
RRP, refused to care for her afterwards, claiming that 
a pediatrician advised her that this disease may be 
contagious to other children.
*	One mother of a three and a half year old boy with 
RRP, told us of his social isolation because of their 
concern that he may be contagious to others.  They 
also were fearful that their younger child might 
contract this disease from him.
*	A number of adult RRP patients have expressed 
concern regarding how contagious they might be to 
their partners.
*	One particularly disturbing incident involved a seven 
year old boy with this disease attending a public 
school in New Jersey.  His teacher wanted him 
removed from her class because she believed that he 
was contagious to the other children as well as 
herself.  She specifically claimed to have contracted 
two warts on her hand as a direct result of his 
presence in her classroom.

This last situation prompted the RRP Foundation to 
contact a number of medical experts who are quite 
knowledgeable about RRP.  We described the classroom 
incident and posed the following questions:
*	Based on your knowledge of RRP, do you consider 
RRP to be contagious for typical school activities, 
such as, classroom, playground and sports?
*	Do you know of any documented cases of one family 
member developing RRP from another?

Responses were received from eight medical experts.  
The following are selective quotes from comments in their 
personal correspondence:
Contagion, continued on page 4

To physicians and nurses:  
Please distribute copies of this newsletter to your RRP patients.

*****Page 2*****

RRPF Officers, Directors & Advisors

Marlene Stern
President
50 Wesleyan Drive
Hamilton, NJ  08690
(609) 890-0502

Michael Green, MSW, ACSW
Vice-President and Director
12219 Phinney Ave. N.
Seattle, WA 98133
(206)361-8185

Bill Stern
Treasurer and  Director
50 Wesleyan Drive
Hamilton, NJ  08690
(609) 890-0502

Henry Woo
Secretary
600 New Hampshire Ave., N.W.
Suite 720
Washington, D.C. 20037

Susan Woo
Director
7107 Georgia St.
Chevy Chase, MD 20815
(301)652-6826

Scientific Advisory Committee

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

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

Brigid G. Leventhal, 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

RRP Network News
Patient/Family Support Network:
Our national support network has grown to over 80 
respiratory papilloma families.  Included are patients from 
23 states and two Canadian provinces.  Current ages of 
patients range from 1 to 75 years.    
We feel that enough support group members have 
provided information to include an additional section (look 
for it in this issue) for tabulating statistics about RRP 
patients in the support group. It is called RRP Patient 
Stats.  Additionally, information provided by RRP 
practitioners will also be included.
We have received questionnaires from about 60% of 
the families.  If you have not filled out a questionnaire 
before or would like to provide updated information for the 
RRP Foundation Patient/Family database, please take a 
few minutes to fill out the accompanying form to the 
extent needed to bring the information about yourselves 
up-to-date.  Please return them to Marlene and Bill Stern. 
Encouraging communication among support group 
members remains a primary focus of the foundation.  
When providing your phone numbers also indicate your 
long distance carrier so as to take advantage of group 
discounts (i.e., MCIs Friends & Family).  For those who 
have access to a computer and a modem or other 
networking capabilities, we cont