Editor’s Note… On November 22, 2017, Sharyn B (Gold Coast, Queensland, Australia) posted the following message to the PRP Facebook Community. Members can CLICK HERE see the original, unedited version of Sharyn’s post and feedback.
“I’ve been told to moisturise at least three times a day. I don’t shower everyday (which is excruciating as i love I love my morning wake up shower). The problem I have now is the moisturiser is caking itself on me and I can’t get it if off with the Cetaphil cleanser I’m using. Any tricks or tips?” Here is the feedback she received.
Steven C — Glenrothes, Scotland, UK
Vivienne P — Australia
I found being constantly covered in moisturizer was a positive. Showers dried out my skin and I dreaded them. I used products called Dermol 500 and Zerobase Emollient Cream which are also antibacterial.
Sharyn B — Gold Coast, Queensland, Australia
The moisturiser makes me feel better. It’s the covering left over that I can’t get off to begin again freshly,
Gail C — Virginia Beach, VA
I found just the opposite. Shower for at least 15 minutes, BUT DONT DRY OFF! Apply moisturizer while still wet. It helps immensely
Tonya G — McDonough, GA
Same for me. I showered everyday, warm not hot, short 10 minutes, then Aquaphor all over. Sometimes I’d shower morning and evening during the worst of it. Helped greatly.
Gail C — Virginia Beach, VA
Even though Aquaphor is the nastiest stuff, it sure was a lifesaver for me!
Teri R — Ft. Wayne, IN
Are you wet when you put your clothes on then?
Gail C — Virginia Beach, VA
No. By then I am just damp. Oh, another tip. Go to thrift stores and buy clothes that are too big for you. Wash them before you put them on. The goop we put on our skin will ruin any good clothes you have. But you won’t mind throwing away clothes you pay very little for.
Jean N — Boston, MA
I use CeraVe Moisturizer. I don’t dry off. I apply the moisturizer while I am still wet.
Ginny M — Lexington, SC
Shower! You need to get the old dead skin off. We shower twice a day when we flare. Do not let it cake up. (Editor’s Note: When Ginny says “We” she refers to herself and her three children, all diagnosed with juvenile onset PRP.)
Jan T — Ringwood, NJ
Mineral oil/baby oil helps remove stickier ointments like Aquaphor. When I cut back on baths and showers (which helped my itching immensely), I also switched to less greasy lotions. I could wash them off with a washcloth or sponge bath.
Pam M — Calgary, Alberta, Canada
I resorted to using a back reaching shower brush. Use it gently all over while in the shower.. Then pat dry and apply moisturizer liberally.
Derrick S — Oak Hills, CA
This thread is a PERFECT example of the PRP problem. No two of us are the same. We just guess at what works. If a shower doesn’t hurt or bother you then do it. If you like to moisturize then do that. In short, if it makes you feel better, do it. I personally think this thing runs its course and you should do what ever you like to be as comfortable as you can during the ride.
Jan T — Ringwood, NJ
That’s basically what my nurse told me.
I sponge bath daily and shower once a week mostly to wash my hair. I use Dermasil lotion, mainly because it has lanolin in it. I had a lot of fissures when this all started and I used lanolin for them. I was hoping the lanolin would help keep them away. Dermasil doesn’t have buildup and I used it twice a day in the beginning and now only once a day unless I feel dry or a lot of itching because of being dry. I have the lotion in my car too.
Lorna R — Eugene, OR
I took two showers a day, moisturized well after each one. I do not agree with this no bathing for days on end. Skin, body cream build up, it stinks and it is uncomfortable. Take those showers, do what makes you feel good. This is all about comfort levels. I shampoo’d twice a day too.
Ellen H — Rome, GA
I can’t imagine if I had not bathed everyday what it would have been like, When I would shower everyday I could just rub skin off my body. This is some high maintence stuff
Tierney R — Virginia Beach, VA
I just took a shower on Monday, my first and only one in a month. I did NOT stink. My husband gets very close to me and tells me I do not stink, nor do I smell bad. Showering dries my skin out and is one of the reasons I take pain medicine. I believe showering robs the body of its natural oils. Putting lotion on does me no good, it’s more like a glue that holds the flakes down. We’re not all alike.
I agree with every word you said, Tierney. And it’s It’s exhausting just a sponge bath with no soap. Just to wipe a little dust off and add a little moisture layer under the “glue”.
Sharyn B — Gold Coast, Queensland, Australia
Thank you Lorna. I do so enjoy my shower it actually takes my mind of all my woes for a short time
Tasha G — Corvallis, OR
I also bathed twice a day during my acute phase and found it so soothing, both physically and mentally. I have never been a long shower person, but just couldn’t resist when life was super hard due to PRP. I also found Epsom salt baths really helped with the itch. I say do what works best for you and be open to exploring various options. The thing about PRP is that it constantly changes, so what works today may not work tomorrow.
My grandmother is having a bad flare up. I have been helping her shower and lathering her up with a psoriasis tar coal shampoo all over her body. Then we moisturize before her skin is fully dry. It stops the burning and severe itching. This condition is slowing killing her. It is so hard to see.
Teri R — Ft. Wayne, IN
How do you put lotion on places you can’t reach on your back?
Gail C — Virginia Beach, VA
Get a small paint roller with removable rollers. And a two-foot handle. Put a healthy glob on your back and roll it all over
Derrick S — Oak Hills, CA
That’s a brilliant idea Gail. Likely less irritating to the skin than rubbing it on.
When moisturizers cake
Welcome to the ReadyTalk Meet & Greet Scheduler. The PRP Alliance has arranged for a 14-day Free Trial of ReadyTalk, a video conferencing platform similar to GoToMeeting but more user friendly. The plan is to facilitate online gatherings where PRP patients and caregivers can meet, greet and chat. Based on the response, we ill schedule additional PRP ReadyTalks in December. The objective is to evaluate ReadyTalk as an ongoing communication tool for the PRP Community during 2018. If you would like to host a ReadyTalk Meet & Greet, simply follow the three steps below. Each two-hour ReadyTalk Meet & Greet will be supported by a fellow PRP patient or caregiver.
Step 1: Select a day
Step 2: Select a time for YOUR ReadyTalk Meet & Greet. Use the Time Zone Converter to confirm YOUR TIME versus DALLAS, TX time. All times listed below are Central Time (Dallas, TX)
Step 3: Send an email to bill.mccue@prpAlliance.org and include:
✽ Your name, e.g., Bill McCue
✽ Title, e.g., Welcome to PRP ReadyTalk
✽ Date: December 2, 2017
✽ Time: Saturday: 8 AM to 10 AM
PRP Ready Talk Schedule
SATURDAY, DECEMBER 25
✔︎ 8 AM – 10 AM: Bill McCue — Welcome to PRP ReadyTalk
✔︎ 4 PM -6 PM: Bill McCue — Welcome to PRP ReadyTalk
From the Editor…
A milestone is defined as “an event or achievement that marks an important stage in a process.” PRP patients and caregivers know about milestones. We already celebrate important milestones in our journey from onset through remission.
✽ Ability to sweat
✽ Return of fingernails to pre-onset glory
✽ Return of hair
✽ A good night’s sleep
✽ Finding a treatment option that is affordable
✽ Returning to the workplace
Now it’s time for the PRP Facebook Support Group to celebrates its own milestone. On November 3, 2017 — just three days into PRP Awareness Month — Tim W from Mackinaw, IL became the 1,100th member of the PRP Facebook community.
Think about it. Formed in April 2013 by Jonah Grant-Scarfe (Vancouver Island, British Columbia, Canada), it took the PRP Facebook Community nearly two and a half years to reach 500 (September 6, 2015). Membership milestones have continued unabated.
✽ 600 on March 21, 2016 — 166 days
✽ 700 in early October, 2016 — 199 days
✽ 800 on January 2, 2017 — 88 days
✽ 900 on April 15, 2017 — 103 days
✽ 1,000 on July 10, 2017 — 86 days
✽ 1,100 on November 3, 2017 — 116 days
Predictably, the PRP Facebook population will ebbs and flows with flows outpacing ebbs. On average in 2017, it takes three months to add 100 members. At that rate, the 1,200 member milestone before Rare Disease Day (February 28) and 1,500 “mega” milestone by or during PRP Awareness Month (November 2018).
Have you completed your PRP census form?
As of November 15, 2017, the PRP Community Database had identified 1,000 PRP patients who are members of the members of the PRP Facebook Community. Unfortunately, only 252 have provided their onset date, onset age and current status (active vs.remission). Please complete the PRP Worldwide Census. LEARN MORE.
OTR26 — PRP Facebook Membership Milestone
From the Editor…
In an open letter to the PRP Community, Drs. Uitto, Keller and Ross announced the establishment of the nation’s first PRP Center of Excellence, located at Sidney Kimmel Medical College at Thomas Jefferson University Philadelphia, PA. What does this mean to the PRP community? We have asked questions based on the comments from the PRP community and will update accordingly.
“It is with great pleasure that we write to you to announce the first PRP Center of Excellence at the Department of Dermatology & Cutaneous Biology of Thomas Jefferson University in Philadelphia, PA. This Clinic seamlessly integrates laboratory and clinical sciences to improve patient care and research to advance our understanding of this devastating disease.”
✽ Will there be more that one PRP Center of Excellence at TJU?
✽ Is the Center of Excellence a clinic or more than a clinic?
✽ What is the difference between laboratory sciences and clinical sciences?
“At the PRP Center of Excellence, each patient will have a personalized consultation to review the prior diagnoses, biopsies and treatments with the world’s leading clinical dermatologists, dermatopathologists and basic science researchers in the field of dermatology. Your appointment will include whole body photography to document one’s progress during care, interdisciplinary review of diagnostic data (biopsy and other tests), and access to direct enrollment into clinical research.”
✽ How much time is allotted for the “personalized consultation”?
“Together with one of our clinical dermatologists, treatment decisions at the PRP Center of Excellence will be based on evidence-based algorithms that draw from research and expert opinions of a variety of medical disciplines to provide you with the greatest chance of successfully and safely treating your PRP.”
✽ How will the PRP Center of Excellence facilitate access to pharmaceuticals that have yet to be approved for PRP by the Federal Drug Administration?
In addition, at Thomas Jefferson University, patients have access to the largest network of tertiary referral center services in the region. This is particularly important because PRP is often accompanied by other diagnoses that can affect quality of life, one’s health and treatment decisions. It is this attention to the whole body that will allow you to heal. Specifically, patients can obtain appointments with therapists, psychologists and psychiatrists within the same building as the Dermatology Clinic to seek care for the depression and anxiety that can often accompany PRP. Patients will also be able to make appointments with Will’s Eye Hospital at Thomas Jefferson University for specialized ophthalmology care as the incidence of damaging conditions of the eye, such as ectropion (outward turning of the eyelid) and keratoco unctivitis (severely dry, pain lly irritated eyes), is increased in PRP. In addition, patients can schedule appointments with other nationally recognized fields such as Jefferson cardiology, endocrinology, gastroenterology, hematology, neurology, oncology, nutrition and integrative medicine to manage any accompanying health concerns.
✽ As a matter of official treatment protocol, will the PRP Center of Excellence refer PRP patients to the following PRP support resources:
▸ National Organization of Rare Disorders: PRP Report
▸ Genetic and Rare Diseases Information Center: PRP Report
▸ PRP Alliance, Inc.
▸ PRP Survival Guide
▸ PRP Facebook Support Group
▸ PRP Community on RareConnect
The PRP Center of Excellence marks another achievement of the PRP Community in advancing access, quality and value of care. We look forward to continuing to serve the Community and hope to see you soon! To schedule your consultation with Drs. Keller and Ross, please call (215) 955-9295.
✽ Is there an expectation that PRP patients beyond Southeaster Pennsylvania, e.g., New York, New Jersey, Maryland and Delaware will access the resources of the PRP Center of Excellence?
✽ Is there an opportunity for a Second Opinion regarding diagnosis and treatment?
✽ Will other healthcare professionals be able to “consult” with the PRP Center of Excellence?
Jouni Uitto, MD, PhD, Professor and Chair
Matthew Keller, MD, Associate Professor
Nicholas Ross, MD, Resident-Physician
The announcement was made to the PRP Facebook Community on November 13 and generated an immediate response including 52 LIKES and 38 COMMENTS including the following (as of 11/14/5:17 PM CST):
Teri R — Ft. Wayne, IN
Eric S — San Luis Obispo, CA
That is terrific news! Though I am in remission I am glad to know that there is a place specializing in this condition for future sufferers.
Marion M — Ireland
Wonderful news and it will help so many. Well done to all who made it happen.
…find a medicine that puts an end to the PRP!
Anne E — UK
OTR26 — TJU Announces PRP Center of Excellence
It was Thursday, October 1, 2015 when I posted the 24th and final issue of On the Road… on the PRP Alliance website. After writing 598 pages of “PRP stuff” I was ready to shift my focus to the PRP Survival Guide. No more self-imposed, end-of-the-month deadlines for me. Besides, I was in remission.
It has been over two years and I am still in remission — but eager to publish a newsletter for the PRP community.
I urge every PRP patient and caregiver who subscribes to On the Road… to take the time to read what we publish and share your personal insights. PRP patients and caregivers live with PRP day in and day out. You are the subject matter expert for your version of PRP. We need to tell all our stories.
Bill McCue, Editor
November 1, 2017
Every patient organization needs an Awareness Day they can call their own. We celebrate Rare Disease Day on the last day of February and share the spotlight with 7,000 other rare diseases. However, PRP Awareness Month gives us 30 days to crow like a banty rooster, shake our tail feathers and get more than our fair share of attention. — Bill McCue
My first PRP Awareness Day was November 28, 2012 and quite “unofficial” by any standards. It began with a phone call from my dermatologist’s office. I was told that the red spot on my forehead on August 8 — nearly four months prior — had been the onset of pityriasis rubra pilaris. Like most PRP “newbies”, I spent the next few days searching the internet and learning what little there was to learn about PRP. What I found was redundant, insufficient, outdated, and typically written for an audience of healthcare professionals.
On November 1, 2013, I celebrated PRP Awareness Day once again. This time I sent out over 1,500 emails to PRP patients and caregivers and called the effort the PRP Worldwide Census. It had taken me several months during the previous summer to review over 29,000 emails in the PRP Support Group Archive going back to November, 1997. As I collected email addresses I also harvested “core” information about the onset, diagnosis, and treatment of PRP. It took six months to solicit 500 responses. That was the genesis of the PRP Community Database.
November 6, 2014 was the first “official” observance of PRP Awareness Day. The date was selected to commemorate the signing of the Rare Diseases Act of 2002 that set the threshold for a rare disease. A rare disease or disorder is defined in the U.S. as one affecting fewer than 200,000 Americans. Using the European standard, however, the U.S. threshold would be only 160,000. Today there are more than 7,000 known rare diseases, and it is estimated that about 30 million Americans are affected by them.
November 6-8, 2015 was the first “official” observance of PRP Awareness Weekend since the 6th fell on a Friday. The “Big Event” would be a global Meet & Greet. Whether face to face or using technology (FaceTime, Skype and ooVoo) we pitched the idea to the PRP Facebook Support Group. Other than a few face-to-face Meet & Greets and a spike in Facetime encounters, the effort missed it’s mark. Lesson learned.
November 1-30, 2016 was the first “official” observance of PRP Awareness Month. Perhaps all we needed was 30 days rather than a weekend or a day. Sunday, November 6th was selected to host a 24-hour GoToMeeting gathering. Only the predictable and dependable cadre of seasoned PRP travelers stopped by to chat.
An important lesson has been learned over the past five years. If you run the same flag up the flagpole, the same people are going to salute. We’re going to try something different.
✔︎ Revive the PRP Community newsletter
✔︎ Launch the PRP Worldwide Census
✔︎ Execute the Rare Skin Disease Referral Initiative
✔︎ Initiate PRP Surveys
✔︎ Recruit participants for PRP research
✔︎ Promote legislative advocacy
✔︎ Support the PRP Alliance.
PRP Awareness Month Begins Today: OTR025.1
I have been collecting PRP-related information from PRP patients and their caregivers since November, 2013. In the beginning it could take six requests before I received a completed PRP census form.
On the 1st and 15th of ever month the NUMBERS will be posted here. The list will show the November 1, 2017 numbers and the most current numbers.
The numbers below are based on the “core data” shared by PRP patients and caregivers worldwide. The PRP Community Database is the most complete representation of our patient population. Thank you for sharing your information.
Bill McCue, Founder/President
PRP Alliance, Inc.
Recap as of November 1, 2017
Numbers in parentheses ( ) indicate “not providing data”
✽ Total number of PRP patients reporting: 1,629
✽ Reporting email addresses: 1,033 (596)
✽ Reporting location: 1,140 (489)
✽ Reporting onset date: 715 (914)
✽ Reporting onset age: 651 (978)
✽ Reporting diagnosis date: 694 (935)
✽ Reporting current status: 656 (973)
✽ Active: 394
✽ Remission: 262
✽ Remission date: 64 (198)
✽ Reporting standard drug therapies: 67 (1,562)
Let’s start with a little history.
When James Shooter was admitted to St. Bartholomew’s Hospital in London, England in 1828, he unwittingly became the world’s first recorded patient with what the medical community would eventually call pityriasis rubra pilaris.
Fast forward 169 years. The PRP community has only been around since late 1997 when a group of PRP patients and caregivers traded emails on AOL. It was Jean-Luc Deslauriers, a Canadian from New Brunswick, who got the ball rolling. Our own Tierney Ratti and Ginny Maxwell’s mother were there when the PRP Support Group was established. For 16 years PRP patients and caregivers traded an average of 150 emails each month. It was the only game in town for a while until technology caught up.
In June 2008, Jonah Grant-Scarfe, another Canadian, founded the PRP Facebook Support Group. In September 2013 it transitioned from a Public Forum into a Closed Group with about 100 members. By year’s end Tierney was the Administrator and the rest is history, Today the PRP Facebook community is nearing 1,100 members and growing. Each month a hundred discussions are started with thousands of comments and replies. The PRP Facebook community has earned the moniker: “The Land of Chat”.
That’s an easy question to answer. It takes money to do the things we want to do. Are the projects and activities worth the effort — worth your donation? That’s a decision we want you to consider. Here’s how we intend to use your donation.
#1 — 2017 PRP WORLDWIDE CENSUS
The first PRP Worldwide Census kicked off on November 1, 2013 with emails being sent to over 1,500 PRP members of the PRP Support Group. Unfortunately, within 24 hours, more than 500 email addresses were purged as “undelverable”. By the end of May, however the PRP Community Database had updated records for over 1,000 PRP patients.
As of November 17, 2017, the PRP Community Database currently tracks 1,627 PRP patients of which 1,002 (62%) are members of the PRP Facebook Support Group. The challenge we face is finding the missing data.
✽ Missing locations: 468 (29%)
✽ Missing onset dates: 868 (54%)
✽ Missing onset ages: 933 (58%)
✽ Missing diagnosis dates: 889 (55%)
✽ Missing current status: 927 (57%)
We can do a better job. The focus of the 2017 PRP Worldwide Census is to fill in the data gaps for all the datapoints including:
✽ Onset date
✽ Onset age
✽ Biopsy history
✽ Diagnosis date
✽ Treatment (oral or injection — from a list of drugs)
✽ Dermatologist of record
✽ Current Status (active/remission)
The PRP Alliance will use the donations we receive to support the 2017 PRP Worldwide Census.
#2 — DIAGNOSING PRP
During the summer of 2013, a total of 487 PRP patients/caregivers were polled by email and given an opportunity to participate in a first-ever PRP Biopsy Poll. The primary objective of the PRP Biopsy Poll was to better understand the role played by biopsies in the diagnosis of pityriasis rubra pilaris from the PRP patient perspective. There were only two questions:
✽ How many biopsies have you had that supported a PRP diagnosis?
✽ How many biopsies have you had that failed to confirm PRP?
Within a three-week period a total of 256 PRP patients/caregivers responded with the following results:
✽ Diagnoses made strictly on the basis of clinical observations — no biopsies were ordered: 7.8%
✽ The results of the biopsy provided sufficient information to support a diagnosis: 45.3%
✽ Non- conclusive biopsies were ignored when the clinical observations were “consistent” with a PRP diagnosis: 23.4%
✽ PRP diagnosis made without the benefit of a confirming biopsy: 23.4%
✽ The PRP Biopsy Poll also suggests that when a dermatologist instructs a pathologist to consider PRP, the results nearly always confirm PRP.
It is time to revisit the issue of biopsies and the timely diagnosis of PRP. Your donation will support the 2017 PRP Biopsy Survey.
#3 — TREATING PRP
When a patient is diagnosed with PRP, the dermatologist typical prescribes medications but rarely refers the patient to the PRP Alliance, PRP Facebook Support Group, the PRP Community on RareConnect or to the PRP Survival Guide. Instead, the PRP patient is referred to Dr. Google, Dr. Yahoo or Dr. Bing to find answers and support on their own. On November 1, the PRP Alliance will begin a year-long campaign to change that practice. The PRP Dermatology Referral Initiative will advocate that patients diagnosed with PRP — or any rare skin disorder — be referred to the following websites:
The PRP Alliance has the support of both organizations in this effort.
PRP Treatment Efficacy Survey
The PRP community has an opportunity to collect information that could whet the appetite of PRP researchers. We hear the mantra every day: What works for one doesn’t work for all. But let’s quantify what works and what doesn’t, e.g., acitretin, methotrexate, Stelara, Cosentyx, Humira, Remicade, Otezla, Taltz, etc. The PRP Worldwide Census will identify drugs that have been prescribed, the PRP Treatment Efficacy Survey will collect information on what worked and what didn’t.
Your donation will support both the Dermatology Referral Initiative and the PRP Treatment Efficacy Survey.
#4 — RESEARCHING PRP
Prior to 2012 the PRP community had lamented the lack of PRP research. In October 2012, researchers at Thomas Jefferson University began genetic research with 50 participants. Their focus was on the genetic mutation of CARD14. During the summer of 2015, Dr. Jouni Uitto, Chair of the Department of Dermatology and Cutaneous Biology expanded that research. The PRP community provided 105 participants and TJU published their finding in 2016. Today both genetic and clinical research continues in Philadelphia.
The PRP community has been officially invited to participate in three major PRP research projects underway at Yale University School of Medicine. The funding for this research comes from the National Institutes of Health and the Foundation of Ichthyosis and Related Skin Types (FIRST). We are one of the “Related Skin Types”,
✽ Genetic research where PRP is hereditary, e.g., familial PRP
✽ PRP Patient Registry
✽ PRP Burden of Skin Disease research
Your donation will support the efforts of the PRP Alliance to recruit participants in PRP research at TJU and Yale
#5 — BUILDING PRP AWARENESS
The PRP community newsletter was published during the period April, 2014 to October, 2015. A total of 24 issues (598 pages) of PRP-related information was shared. The newsletter was suspended when the focus shifted to the PRP Survival Guide. It’s time to bring back the newsletter. It’s time to revive: On the Road… Our Journey from Onset through Remission .
The newsletter will mirror the organization of the PRP Survival Guide.
✽ Chapter 1 — The Basics
✽ Chapter 2 — Diagnosing PRP
✽ Chapter 3 — Treating PRP
✽ Chapter 4 — Daily Life
✽ Chapter 5 — PRP Parents and Kids
✽ Chapter 6 — Remission
✽ Chapter 7 — PRP Research
✽ Chapter 8 — PRP Advocacy
Your donation will underwrite the email distribution of On the Road… to the PRP community worldwide.
If you’ve been wondering how to help or if you’ve been wishing you could do something more, we welcome your tax deductible contribution.
If you needed some “specifics” to justify a donation, we hope that the information we provided here was enough.
The PRP Alliance is a 501(c)(3) tax-exempt nonprofit corporation. Our Employer Identification Number is 47-3868578. We will make sure that your donation receives a proper receipt for your tax records.