On Our Radar — Land of Chat

The BRight Side of a Dark Day
Jan Tennant
11 hrs June 15

In the realm of the remarkable: I got a bad scrape on my forearm two days ago. It swelled up, got very red, and was like any other scrape. Today it is almost gone! Also, have I mentioned that all the age spots on my hands and face are gone?

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Communicating with tju

 

Dear all, Due to institutional regulations, I will be using this account strictly for communicating periodic updates to a group. I am not permitted to “friend” or “accept” friend request. I will also not be using the chat feature. Please do not take this personally! 🙂

It would be best (for individual questions) to use the email address PRP@jefferson.edu. I typically get a chance to check this email every 24-48 hours. I hope to respond to basic questions within that time frame. Items related to study enrolment documentation can take longer due to scanning and other requirements.

If it is urgent, you may email my personal email Nicholas.Ross@jefferson.edu. Nevertheless, for record keeping purposes, it is best to always use the PRP@jefferson.edu address to centralize all your communications with our study group!

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Before the diagnosis — State of Worry

Hi All,
I’m new here. On April 20th my dermatologist did biopsy and after 4 weeks said it is either chronic eczema or PRP. And he asked me to get an appointment at Brussels university hospital with a research doctor. I could get appointment only for 22 June. But in mean time, I read about PRP last week for first time and I became very sad and afraid.

 

2018 PRP Worldwide Census

Objective: To conduct a PRP Worldwide Census.

Problem to be addressed: The PRP Community Database currently tracks 1,584 PRP patients of which 651 (41%) are members of the PRP Facebook Support Group and 217 (14%) are members of the PRP Community on RareConnect. Unfortunately, the following information is currently missing.

✽  Missing email addresses: 557
✽  Missing locations: 468
✽  Missing onset dates: 868
✽  Missing onset ages: 933
✽  Missing diagnosis dates: 889
✽  Missing status: 927

Methodology: Use the technical resources of Constant Contact to solicit and protect information.

Financial Impact: The out-of-pocket costs associated wth the conduct of the 2018 PRP Worldwide Census are limited to a monthly prescription which provides for an unlimited number of surveys.

✽ Vendor: Constant Contact
✽ Subscription: $47.97 per month; $575.64 annual


Measuring Success
:

✽  Reduction is the number of missing data points
✽  Increased membership in the PRP Facebook and RareConnect communities
✽  Identification of undeliverable email addresses.
✽  Creation of charts and tables

 

 

 

2018 PRP Worldwide Census

PRP Newsletter Revival

Objective
To resurrect the PRP community’s original newsletter. A total of 24 issues (598 pages) of On the Road … Our Journey from Onset through Remission were published during the period April 2014 through October 2015.

Problem to be addressed
The PRP Alliance does not “push” information to the PRP community. We depend on PRP patients and caregivers to reach out via the the PRP Facebook Support Group with questions (posts) and access the PRP Survival Guide and PRP RareConnect Community and on a need-to-know basis.

Scope
The reformatted online newsletter will present a synopsis/overview of articles with links labeled READ MORE or FULL STORY. Topics will include:

✽  Diagnosing PRP
✽  Treating PRP
✽  Daily Life
✽  PRP Parents and Children
✽  PRP and Remission
✽  PRP Research
✽  PRP Advocacy

Methodology
The PRP Community will utilize Constant Contact to provide a weekly or bi-weekly update on issues related to the PRP.

Measuring Success
Success will be measured by the following:

✽ Our ability to publish 26 or 52 issues during the period November 1, 2017 through October 31, 2018.
✽ Increased number of subscribers

PRP Newsletter Revival

Canadian Skin Patient Alliance

Are you involved with a skin-patient support group? Would you like your group to be part of the CSPA network and benefit from everything belonging offers? Large or small, every group that is not-for-profit and patient-focused is welcome. Joining is free!

Contact Diane Christin, Manager Stakeholder Relations at diane.christin@canadianskin.ca or 1-613-864-0745 to discuss the benefits of having your organization join the Canadian Skin Patient Alliance, then fill out the form below to start the process.

Application for CSPA Affiliation or as a CSPA Global Collaborator

If your group would like to join the CSPA as an affiliate, please read the requirements section below, then fill in the fields and submit the form. If you are interested in joining as a global affiliate please read the requirments and then submit this form.  We will get back to you as soon as possible. If you have any questions please feel free to contact us.

Requirements

A CSPA affiliate member is a federally or provincially incorporated not-for-profit organization or registered charity that exists to help Canadians deal with a skin condition(s) and/or disease(s) by providing support, education, information, and/or undertaking or supporting fundraising, research and/or advocacy on their behalf that has been accepted by the Board of the CSPA upon recommendation by the CSPA Affiliates Committee for membership.

As a matter of policy, which is designed to maintain the CSPA’s good standing in the community, the CSPA invites only organizations who share its vision and its approach to carrying on its affairs. Of particular importance to the CSPA and its stakeholders are the following:

  • Patient-focused programming and initiatives
  • Transparency
  • Fiscal responsibility/transparency
  • Unbiased neutrality with respect to recommendations for treatments for diseases (No direct advertising for sponsors’ products in any materials or websites.)
  • A functioning governance model with structured clinical advice from a relevant health-care professional or team
  • The organization cannot be solely funded by a single commercial entity

Please fill in the following information for review by the Affiliate Committee for acceptance as a CSPA affiliated organization:

Application for CSPA Affiliation

Organization name
Your email address(*)
Your phone number and extension(*)
Who this organization helps
How many people are affected by the skin disease, how the disease affects them
Objectives of the organization: Current (and proposed if applicable).
Who’s involved
Organization Type
Board structure and composition
Web Address
Other outreach initiatives (please provide copies of any pamphlets, newsletters, etc. your organization has produced and distributed over the past 5 years)
Description of membership program (if applicable)
What do you plan to accomplish this coming year?
5-year plan
What your long-term (realistic) goals are
Sponsorship opportunities
Projects that require sponsorship

Last year’s financial statements (audited, if possible)
Upcoming year’s budget
If charitable organization, please submit CRA filings from the previous 5 years (in ZIP format)

Sauna Suit Feedback


From the Editor…

The issue of sauna suits resurfaced with an interesting exchange between PRP Facebookers. Makes one wonder: How many dermatologists would prescribe a sauna suit to a PRP patient? Would the cost of the sauna suit be covered by insurance. Worthy of a survey?


Jan B — Forest Lake, MN
I am being seen at the University of Minnesota. I saw Dr. Daniel Miller when I was in the ER in full bloom. He’s the one that recommended the sauna suit which has been a blessing for sleeping.Anita P — Ohio

 I just recently bought a sauna suit. Thinking it won’t absorb the lotion I put on in the morning. Thought I would wear it when I didn’t have to go anywhere for a while just to let the cream or oil of the day soak in. My hands feel much better when I wear the plastic gloves for food service. I found them at the dollar tree and thought I’d see if they helped and they do. So I thought the sauna suit might do the same. Did your doctor recommend a way to use it.

Lorna R — Eugene, OR
The treating physician at OHSU, ordered the sauna suit as part of my treatment. What you have to do, is wear it correctly. No clothing underneath it. Shower/bathe, cream down with body cream, put the suit on, then put your regular clothing on over it. I did wear my undies, I did not wear my bra. I had two suits. I wore a sauna suit for four years.

Jan B —
I was advised to buy a sauna suit at Target ($20) shower, lather up with ointments, wear it at night without underwear. Since I started doing this it has helped my sleep tremendously. Everything stays moist, warm and controls the itching. I was told I could also wear it during the day if I’m too uncomfortable and I have done that. I have gone through approximately six suits because my husband washes them by hand everyday. After 4-5 days, the vinyl becomes stiffer and prickly. I did go online and found some on Kohls.com much more reasonble at $7.99 per suit currently on sale for $5.99. These suits are somewhat bulky to wear under clothes.

Bill M — Plano, TX
The sauna suit that Lorna Roberts refers to is manufactured by Delasco in Council Bluffs, IA. The website description states:

“The Sleep Sauna occlusive treatment suit is a durable two-piece suit, prescribed by dermatologists, for use in the treatment of psoriasis and other skin conditions. It is guaranteed against manufacturing defects for one year. Simply return the suit for a replacement.

“Made of soft, pliable nylon, Sleep Sauna suits go right in the washer and stay soft, wash after wash. The suit can be worn for everyday activities such as relaxing, exercising or sleeping. Prevents staining of clothes and bed linens and eliminates messy wrapping and stiff plastic alternatives.”

I doubt if the products available at Target and Kohls are designed to do what Lorna’s TWO sauna suits did for the four years she wore them. The expression “Been there, done that” applies to Lorna on this subject.

Lorna R
Exactly. Not available at retail stores. I loved mine and my purple Nitrile gloves, the latter being my own idea. Delasco.com

Jan B
I too have ordered the Delesco sauna suit ($60). It is wonderful, very soft and machine washes up beautifully. The website says that it is occlusive but I have found that it does allow ointments to ooze through. I think it would be great to wear under clothing if you are using lotions and creams, unfortunately for me I’m not at that point in my journey yet. I believe you can get your physician to write an Rx for you and it may be covered by your insurance.

Lorna R
100%nylon….they are so durable. I still have mine. lol I didn’t mind the little bit of residue, that was certainly less than if I had not wore the suit. The idea is to keep the moisture and heat next to your skin.

Original unedited post, PRPFB Members only, August 21, 2017

PRP Community Nominates Editorial Advisory Board

From the Editor…

On July 17, 2017, the PRP Facebook Community was given an opportunity to identify PRP-savvy dermatologists to participate in a PRP Community research project.  The goal was to identify at least 10 PRP patients/caregivers who have a WORKING relationship with their dermatologists. By WORKING relationship we meant that the PRP patient/caregivercould ask their dermatologist to read something about PRP and then tell you if it is accurate or not. And if something is incorrect, offer a better answer.

What will they be reading? The draft of the 2017 revision of the PRP Report maintained by the National Organization of Rare Disorders in their Rare Disease Database. The current NORD PRP Report was last reviewed in 2007 and is in need of updating.

A total of 11 dermatologists have been nominated: six from the U.S. and one each from Canada, Switzerland, Spain, The Netherlands and the UK.

Bill M — Plano, TX
(1)   Arturo Dominguez, MD, Associate Professor
Department of Dermatology
University of Texas Southwestern
Dallas, TX
(2)   Teri Greiling, M.D., Ph.D., Assistant Professor of Dermatology
Oregon Health Science University
Portland, OR

Tierney R — Virginia Beach, VA & Richard L — Lansdale, PA
(3)   Matt Keller, MD, Assistant Professor,
Sidney Kimmel Medical College at Thomas Jefferson University
Department of Dermatology and Cutaneous Biology Department,
Philadelphia, PA

Christine G — Zürich, Switzerland(4)   Dr. Martin Theiler, MD, Consultant of Paediatric Dermatology
Department of Dermatology
Zürich University Hospital
Zürich, Switzerland

Ginny M — Lexington, SC
(5)   Jessica Burgy, MD
Columbia Dermatology
Columbia, SC

Jane G — Vancouver, British Columbia, Canada(6)   Julie Prendenville, MB, Division Head
Division of Pediatric Dermatology
British Columbia Children’s Hospital
Vancouver, British Columbia, Canada

Craig W — Sheffield, England, UK
(7)   Margaret Wood, MD, Dermatology Consultant
The Rotherdam NHS Foundation Trust
Dermatology Department
Rotherham, England

Karen B — Rochester, NY
(8)   Nanna Duffy, MD
Genesee Valley Laser Center
Rochester, NY

Jandina G — Portland, OR
(9)   Dr. Nicole Fett, Associate Professor of Dermatology; Director, Dermatology Residency Program
Department of Dermatology
Oregon Health Science University
Portland, OR

Diego T — Barcelona, Spain
(10)   Jesus Gonzalez Rupérez, MD
Hospital de Viladecans
Barcelona. Spain

Aditia F — Arnhem, Netherlands
(11)   Dr. Marieke Seyger, MD, Ph.D
Department of Dermatology
Radboud University
Nijmegen Medical Centre
Nijmegen, the Netherlands

First things first. The FIRST draft of the 2017 revision is ready for review by ANYONE in the PRP community. The review process begins with an invitation. It’s the first step.  When enough PRP patients and caregivers have read the revision and offered comments, a SECOND draft is written and given to the Editorial Advisory Board. Based on their comments and suggestions, a third and FINAL draft is prepared and given to the National Organization of Rare Disorders. They make the final edits and post the 2017 revision.

PLEASE CLICK HERE TO TAKE THE FIRST STEP
PRP Community Nominates Editorial Advisory Board