PRP Alliance

PRP Awareness Month Diary

From the Editor

Every November — since November 2013 — I have attempted to find some meaningful way to build awareness of PRP within the PRP global community and among healthcare professionals. After a four-month reorganization of the PRP Survival Guide, my primary goal is to expand content by ADDING more insights and observations from PRP patients and their caregivers.


WEEK 1 — Day 1 (PRP: 101)
The objective for WEEK ONE of PRP Awareness Month is to simply to inspire YOU to check out PRP 101. The PRP Survival Guide has been reorganized around four subject areas. LEARN MORE

WEEK 1 — Day 2 (Land of Chat Stats)
BRAVO to all PRP Facebookers who post, comment, reply to comments, and react (like, love, care, sad, haha, wow and angry). Whether patient or caregiver, active or in some form of remission), or an “old-timer” watching from the sidelines — YOU are part of the Land of Chat. Collectively, you have ensured that the PRP Facebook Support Group retains the moniker” Land of Chat.
Over the past year, the Land if Chat has averaged 126 posts, 2,038 comments, and 31,499 reactions per month.

WEEK 1 — Day 3 (2020 PRP Global Census)

The PRP Alliance contracts annually with Constant Contact to provide the technical support necessary to collect and process the collection of basic informations, e.g., name, location, onset date, onset age, and current status.

❏   GO DIRECTLY TO THE CENSUS FORM

❏   LEARN MORE about the 2020 PRP Global Census


WEEK 1 — Day 4 (NORD PRP Report)

The NORD PRP Report is available in THREE formats. I urge you to check out each

❏  The PRP Survival Guide’s Translation Version provides PRP patients and caregivers with the option to read about PRP in languages other than English. GO TO: http://prpsurvivalguide.org/2019/10/28/9345/
❏    NEW. A 22-page, downloadable PDF has been created. Hand a copy to your dermatologist on your next clinic visit. Go to: PDF http://prpsurvivalguide.org/…/11/NORD-PRP-REPORT-PDF-1.pdf
Please take 90 seconds to click the three links and make a mental note that these resources are available to you and those you hope to educate.

Week 1 — Day 5 (the endgame)

From the moment we are diagnosed with PRP and start our journey, our sights are set on the end oof that journey. There is no universal definition of remission, but the topic is certainly worth discussing.

GO TO: The Endgame.


Week 1 — Day 6 (coping strategies)
Many PRP patients have found solace in humor, poetry, art and inspirational messages of hope shared by fellow PRP Facebookers. Experience a collection of coping strategies.

Week 1 — Day 7 (children with prp)
Every PRP parent and adults diagnosed with juvenile onset PRP to help build the content of the CHILDREN WITH PRP section of the PRP Survival Guide.  Please use “Leave a Reply” to share what has worked for you.
❏   GO TO PRP 101, Daily Life and become familiar with “Children with PRP”. 
❏   If you are a PRP parent, please take a few minutes to read Christine Gunther’s Open Letter.

Week 2 — Day 8 (what works)

Introduction to “What Works”, a relatively simple way to collect and retain the insights and observations of the PRP global community about the efficacy of specific medications and treatment options. Together, we can make it easier for other PRP patients and caregivers to learn what we have already learned.

PICK A MEDICATION THAT WORKED FOR YOU  and use “Leave a Reply” to share what worked for you


Week 2 — Day 9 (uv light treatment)
Anita Storment Ray (Pearl, Mississippi) posted the question: “Has anyone had any relief from using UV light treatment?” While the odds are pretty good that a comparable question has been asked many times before by others, retrieving those posts and digesting those posts is “a bridge too far” for most PRP patients/caregivers. Here’s how Anita’s post and the comments made their way into the PRP Survival Guide.

Week 2 — Day 10 (healing milestones)
It has been said that the treatment of PRP includes a “Tincture of Time” and a “Pinch of Hope”. If that is true, then a “Healing Milestone” is that “Pinch of Hope.
At Day 10 we are one-third the way through PRP Awareness Month. It seems like a perfect time to focus on Healing Milestones.
 
In My Humble Opinion there should be a healing milestone for every symptom of PRP and every indignity we suffer. Our journeys can be so long and unrelenting that we need to recognize EVERY positive marker along the way.
GO TO: http://prpsurvivalguide.org/2017/05/22/healing-milestones/
Week 2 — Day 11 (feet & mobility)
Please take a few minutes to checkout the information that has been gathered on the subject of FEET and MOBILITY. There are SIX separate webpages.
❏  Feet & Mobility — Overview
❏  Footwear
❏  Skin Removal Strategies
❏  Handicap Parking
❏  Photo Gallery of PRP Feet
❏  Feet in the Queue

Week 2 — Day 12  (quotable quotes)
Have you ever heard a healthcare professional say something about PRP that is simply incorrect? In fact, sometimes what they say reaches the level of stupid.
GO TO: http://prpsurvivalguide.org/2020/11/12/quote-of-the-day/

Week 2 — DAY 13 (land of chat roster)
How would you like to see a list of 1,891 kindred spirits?  It takes a case-sensitive password to access the PRP Portal. The password is missingdata. All letters are lowercase and here is no space between missing” and “data” the two words.

Week 2 — DAY 14 (eyes & impaired vision)
A special thanks to Jan Tenant, Ringwood, New Jersey for her efforts to provide a PRP-oriented tutorial on eyes and impaired vision. In so doing she set a standard for patient-written tutorials in other areas, e.g., feet and impaired mobility, hands and impaired dexterity, etc.
Patients diagnosed with pityriasis rubra pilaris face a myriad of daily challenges to body, mind, and spirit. The following article focuses on our eyes and impairments to vision. A PRP patient can experience one or more of the following during their journey.

WEEK 3 — DAY 15 (itch report)
Project ITCH has three parts: (a) read 70 pre-qualified posts and their the 2,500-plus comments, (b) enter the relevant responses into a database, and (c) render conclusions. The next-to-the-last step is to share the findings of the 2021 PRP Itch Report with the PRP Global Community (patients and caregivers) and an ad hoc review board of yet-to-be recruited dermatologists, AND seek feedback. The final step will be to work with ONE dermatologist to publish the findings of the 2021 PRP Itch Report in a professional medical journal.
Please take a few moments and check out Project ITCH. Any feedback will be appreciated.

WEEK 3 — DAY 16 (patient-friendly glossary)

The goal of the PRP Patient-Friendly Glossary of Words, Terms and Jargon is to take some of the mystery and fear out of PRP. Not a lot … just a wee bit. Think back to the day you first heard the words: pityriasis rubra pilaris. CLICK HERE to access the index of words, terms and jargon go to:


WEEK 3 — DAY 17 (moisturizers)
Today we focus on moisturizers.
I. THE BASICS

IMHO — when looking for a PRP friendly moisturizer, you want to select one with the following qualities:

✔︎  Fragrance free (instead of unscented)
✔︎ Perfume free
✔︎ Dye free
✔︎ Cream or ointment instead of lotion. There is not universal agreement on this one.
✔︎ You like it (If you like it you will use it)

✔︎ Fits your budget

II. FREE AQUAPHOR (USA AND CANADA)
III. FEEDBACK FROM ROBERTS & FISHER

WEEK 3 — DAY 18 (words that describe prp)
On October 4, 2017, Murray Rose (Surrey, British Columbia, Canada) asked PRP patients and caregivers to share one word that describes PRP.
He asked us to fill in the blank: “PRP, you are ________”.
On November 17, 2020, Murray resurrected the find-a-word challenge with another post.
The responses to both posts are assembled for your review. Feel free to use the “Leave a Reply” at the end of the webpage to YOUR word(s) as appropriate. GO TO: http://prpsurvivalguide.org/2020/11/15/what-is-your-word/

WEEK 3 — DAY 19 (dr. google knows us)
This morning (November 19, 2020), nearly eight years later, I performed a Google search for pityriasis rubra pilaris. At the top of the page was the “SUMMARY” extracted from the NORD PRP Report — OUR 5,000-word PRP report written by and for the global PRP community. In fact, the second document in the list of Google results was the GARD PRP Report. Again, we helped the folks at the Genetic and Rare Disorders (GARD) Information Center compile the information and worked to give it a patient-friendly feel

WEEK 3 — Day 20 (Working with prp)
For those PRP patients whose onset of pityriasis rubra pilaris came when you were employed, the decision to continue working or not to work is your choice subject to the realities of the workplace…and your own body.
The decision to continue working or not is the patient’s choice subject to the realities of the workplace and effects of PRP.
If working is a subject of interest, CLICK HERE to learn more. 
❏ To Work OR Not To Work
❏ PRP, ADA and the Workplace
❏ PRP AND Workplace Strategies
❏ Working — In the Queue

WEEK 3 — DAY 21 (history lesson)
Do you think your dermatologist could fill in the blanks? Can you?
When (patient name) ___________________ was admitted to St. Batholomew’s Hospital in London, England in (year) ________, he unwittingly became the world’s first patient with what the medical community would eventually call pityriasis rubra pilaris.

Eventually, Ernest Besnier, a dermatologist in Paris, France, published a 120-page article presenting nine cases and forever fixed the name of our skin disorder.

The evolution of the name “pityriasis rubra pilaris” took ____ years.

The next time you see your dermatologist, be a source of enlightenment and share the history of our name.

WEEK 4 — DAY 22 (prp global cohort)

In medicine, a COHORT is a group that is part of a clinical trial or study and is observed over a period of time.

The largest cohort of PRP patients was assembled in late 2018 by the PRP global community. A total of 574 PRP patients participated in a comprehensive survey developed by UCLA David Geffen School of Medicine, USC Keck Medical School, and Kaiser Permanente.

The objective of the PRP global community for Rare Disease Day is to establish a 600-member PRP Global Cohort. Just take a deep breath…the kickoff is November 30 — the last day of PRP Awareness Month.

Posted: http://prpsurvivalguide.org/…/the-prp-global-cohort…/


WEEK 4 — DAY 23 (calculating coverage)
My PRP journey began with a dime-size red spot on my forehead. It quickly spread to my face, neck and scalp. As the weeks passed my upper torso (front and back) became engulfed. Then my feet. Then my lower legs. It took me four weeks to be in what I considered to be “in full bloom”. When asked, I would “guesstimate” coverage.
It wasn’t until after my remission that a fellow PRP patient asked how she could calculate coverage. That’s when I stumbled upon the Rule of Nines, a technique used in the evaluation of burn victims. The Rule of Nines is used to help guide treatment decisions including fluid resuscitation and becomes part of the guidelines to determine transfer to a burn unit.
IMHO the Rule of Nines should be used by PRP patients to calculate coverage — especially when talking with healthcare professionals. As a wordsmith, however, I think “In Full Bloom” provides the right imagery when talking with civilians.

WEEK 4 — DAY 24 (diagnosing prp)

Eight years ago the PRP Worldwide Census included two questions: (1) When did the symptoms of PRP first appear. (2) When were you diagnosed? I was motivated to ask those questions because the elapsed time from my onset to diagnosis was 15 weeks (August 8 to November 27, 2012). I wondered whether that was typical or an anomaly.

I have learned that there is nothing typical about diagnosing PRP. The fastest diagnosis was with a patient in a VA hospital sitting in a corridor. A dermatologist walked by, stopped, glanced back and told the patient he had PRP and to tell the doctor. The patient did and a biopsy proved him right.

I think we should be collecting DATE OF DIAGNOSIS and calculating ELAPSED TIME FROM ONSET TO DIAGNOSIS. Then we should be asking why the elapsed time was so fast or too slow. Just pondering out loud.

❏ Diagnosing PRP — More stuff to ponder
http://prpsurvivalguide.org/2017/07/23/rdb-diagnosis-v2/

❏ Why is it so difficult to diagnose PRP?
http://prpsurvivalguide.org/…/why-is-it-so-difficult…/

❏ Advocacy Goal: timely and accurate diagnosis of PRP
http://prpsurvivalguide.org/…/advocacy-issues-related…/

❏ How can I be sure the diagnosis is correct?
http://prpsurvivalguide.org/…/how-can-i-be-sure-the…/
And here’s a bonus question: Do you have a copy of your biopsy report and what does it say? It’s part of your medical record.
Have a great day and stay safe.

WEEK 4 — DAY 25 (EArs & IMpaired hearing)
When dealing with your dermatologist and impaired hearing is the topic, demonstrate your own ear-savviness. Do not call the stuff in your ear “the stuff in my ear” or a “jelly bean”. Ask the following question:
“I may have a build up of cerumen. Do you think I need a referral to an otolaryngologist?”
The real takeaway here is this: If I had seen the ENT specialist sooner, I might have avoided a year of inflammation.

WEEK 4 — DAY 26 (giving thanks)

It was November 2013. I was 16 months into my PRP journey and five months from reaching remission. I emailed a poem to 500 PRP patients,  the first edition of the PRP Global Database.

Eight years later that database now includes  2,283 PRP patient profiles representing 1,077 patients and caregivers who are celebrating Thanksgiving in the US, 850 who live beyond our borders, and another 356 who have yet to share where they call home.

There is much for which we can be thankful. Let’s start with the fact that we don’t have to be alone on our PRP  journey.


WEEK 4 — DAY 27 (PRP Survival Guide)
As PRP Awareness Month draws to an end, I want to ask each member of the PRP Facebook Support Group to take a closer look at the PRP Survival Guide and ask yourself this question: What’s missing?
❏ It might be a missing question.
❏ It might be a better answer.
❏ It might be a topic that has yet to be addressed,
In My Humble Opinion (IMHO) I need Your Humble Opinion (YHO).

WEEK 4 — DAY 28 (Tierny ratti memorial

It has been 11 weeks since Tierney Ratti was taken from us. She is missed by those who knew her and loved by those who called her a friend.  It especially fitting that the global PRP community celebrate her life of caring and sharing during PRP Awareness Month.


WEEK 5 — DAY 29 (Tierney Ratti’s DELETE button)

Yesterday, Murray Rose and I represented the PRP Global Community at a Ceremony of Life of the late Tierney Ratti (1959-2020). Organized by her family, we were all there on ZOOM to celebrate the limitless caring, sharing and friendship of the long time Land of Chat Administrator and PRP Patient Advocate.

Among my personal remembrances of Tierney going back to November 2013 was her relationship with the infamous Delete Button.

There was a time when the Land of Chat was routinely infiltrated by individuals posing as PRP patients. The nefarious goal of these charlatans was to sell Ray Ban sun glasses or an endless assortment of multi-level marketing products. Once the interlopers were identified, Tierney would delete them with gusto and a smile.

As the years passed, the actual clicking of her Delete Button was delegated to me. However, I would ALWAYS seek her approval before deleting any member. It was, and will always be, HER delete button.
In recognition of her contribution to the PRP global community, the Delete Button will hereafter be referred to as the Tierney Ratti Delete Button.

WEEK 5 — DAY 30 (RECAP & PATH FORWARD)
November 2020 has been a busy month in the Land of Chat.
✔︎ 176 posts (up 60% versus October)
✔︎ 2,298 comments (up 19% versus October)\
✔︎ 3,891 reactions (up 61% versus October)
✔︎ 1,710 active members
PRP Awareness Month Diary

A day-by-day recap of what has been has been posted to the Land of Chat is now available to current members who might have been distracted by LIFE, e.g., PRP, COVID-19, family, friends, pets, Thanksgiving, and the never ending daily challenges we face to mind, body and spirit.

The PRP Awareness Month Diary will also be included in the orientation for future members. http://prpsurvivalguide.org/…/prp-awareness-month-diary/

What’s Your Path Forward?
I have always used PRP Awareness Month to ponder my next 13 months. What can I do to advance awareness of PRP among patients, caregivers, family, friends, co-workers, employers, teachers, school nurses, and school administrators. And let’s not forget dermatologists, dermatopathologists, ophthalmologists, podiatrists, otolaryngologists (see Day 25), and our family doctors. I have two projects on my To-Do list.

(1) PRP Global Cohort
Create a PRP Global Cohort to conduct patient-initiated observational studies under the supervision of a dermatologist. The first observational study will focus on the Dermatology Life Quality Index (DLQI) and we have secured the assistance of Dr. Teri Greiling, Oregon Health and Science University as the principal investigator.

(2) PRP 101
Just prior to PRP Awareness Month, the PRP Survival Guidewas restructured and given a new moniker: PRP 101. An effort will be undertaken throughout 2021 to provide expand the content — more questions and more detailed answers. The source for both questions and answers will continue be the posts and comments generated by an ever-growing membership of PRP Facebookers.
It has been a challenging year for all of us. In September we lost Tierney Ratti, the Gold Standard for caring and sharing. It is a hole that she would want ALL of us to fill. http://prpsurvivalguide.org/2020/10/16/prp-101-our-journey/