2022 PRP Awareness Month Index
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Nov 1 — PRP Awareness Month Has Begun
The annual, month-long, awareness-building campaign began yesterday in New Zealand and Australia. They are already on Day two.
Takeaway #1: There are 1.487 PRP patient profiles in the PRP Global Database.
Takeaway #2: We are a global community with valuable resources,
- PRP Support Group (1,801 members),
- PRP Survival Guide (nearly 600 lay language articles,
- PRP Global Database (PRP patient profiles)
- ongoing PRP research (Oregon Health and Science University and the International Alliance of Dermatology Patient Organizations)
All PRP patients and caregivers are invited to participate in a month-long campaign of enlightenment.
Nov 2 — 11 Reasons to Join our Support Group
In March 2014, the 200-plus members of the Facebook-based PRP Support Group (we now have over 1,800 members) were asked the following question: Why should a PRP patient or a caregiver join our support group? They came up with 11 reasons. Did they get it right? Should there be a number 12? CLICK HERE to access 11 Reasons in the PRP Survival Guide.
Nov 3 — The NORD PRP Report
The current NORD PRP Report was revised in 2017 by PRP patients and reviewed by a team of healthcare professionals including a past president of the American Academy of Dermatologists, the Chair of the Dermatology Department at Thomas Jefferson University, and the current Vice Chair of the Dermatology Department at Oregon Health and Science University.
At the same time, a “Translation Version” of the NORD PRP Report was added to the PRP Survival Guide to accommodate PRP patients and their caregivers who prefer using using a language other than English. This “Translation Version” provides easy access to Google Translate.
The NORD PRP Report is what you should share with your dermatologist, GP or anyone in your life with a need to know. CLICK HERE to access the NORD PRP Report.
Nov 4 — Diego the Tall’s PRP Research Project
A funny thing happened to me on the way to this year’s PRP Awareness Month. Diego Torras, a member of our PRP Support Group since January 21, 2016 and a PRP patient himself since June 1986 (age of eight), reached out to me with a request. He wanted to know if his son — also a Diego — could access the PRP Global Database to conduct a Quality of Life survey of PRP patients. This research project is a major requirement for his son’s senior year in high school.
In late October I met with father and son on ZOOM. It became immediately apparent that I needed to find a way to differentiate between the two. “Junior” wasn’t an option. The result: the father is now “Diego the Elder” and the son is “Diego the Tall”.
The rest is history. CLICK HERE to access Diego the Tall’s Quality of Life Survey. The results will be published in the PRP Survival Guide and shared with the PRP global community.
Nov 5 — Take Control of Every Clinic Visit
I was not a good self-advocate for the first three months after the onset of pityriasis rubra pilaris — before I knew it was PRP. I will be the first to admit that I let my dermatologist “run the show”.
She focused on a diagnosis of seborrheic dermatitis and prescribed prednisone with absolute confidence and said “come back in two weeks”.
I was relieved and expected to return in two weeks all healed.
When I returned, however, the dime-size red dot on my forehead was now a more serious rash reaching to my shoulders and upper torso. The prednisone dosage was increased and I was once again told me to come back in two weeks. More prednisone. More weeks until a 20-foot rubber duck appeared in my bedroom.
After six days in a hospital bed I fired my first dermatologist and received a proper diagnosis based on the clinical observations of a new dermatologist and a supporting biopsy. I was finally on the right road.
Dermatologist #2 referred me to the University of Texas Southwestern (Dallas) for ongoing treatment.
My relationship with my THIRD dermatologist was based on self-advocacy.
I discovered the value of asking questions. The most effective question I asked during clinic visits was “Why?” I routinely brought FIVE questions to every clinic visit and Dr. Dominguez patiently answered each. Twelve months later I was med-free. Another two more months and I was symptom free.
I am looking for 10 PRP patients to help develop a PRP CLINIC strategy for PRP patients and their caregivers.
Also, take a minute or two to review Principle 3 of Standing Up for Your Health, a program upon which we can build.
CLICK HERE for more information about effective clinic visits.
CLICK HERE for more information about effective clinic visits.
Nov 6 — Who was James Shooter?
Kudos in advance to any PRP patient or caregiver who know the answer and has retold the story to his or her dermatologist.
I have NEVER met a dermatologist who knew the significance of Mr. Shooter. CLICK HERE to learn more about James Shooter and his relationship to pityriasis rubra pilaris.
Nov 7 — Stand Up and Be Counted
It’s day 7 of PRP Awareness Month and the following appeal targeted PRP patients/caregivers who have yet to complete the Quality of Life survey posted in support of Diego Torras’ son — a high school senior.
An email was sent to the PRP global community on November 6. While 642 opened it — a respectable response — only 12 actually completed the survey. The PRP global community can do better.
It will take members less than four minutes to answer the 20 questions. Most are multiple choice. There are nine additional opportunities to COMMENT. Most respondents write a sentence or two. Here are three of the 63 responses to Question #15: Has PRP caused people to treat you unfairly or in a hurtful way?
- “Snide, unkind comments
- “Turned down for jobs where visibility matters”
- “Had a lady refuse to take my debit card from my hand once. Said she didn’t want to catch whatever I had.”
We can do better. CLICK HERE to complete the survey.
Nov 8 — Should PRP Caregivers Unite?
It has been said that there are only four kinds of people in the world. Those who have been caregivers. Those who are currently caregivers.Those who will be caregivers, and those who will need a caregiver.
I’ll be the first to admit that my focus over the past 10 years has been on the daily challenges of body, mind and spirit faced by PRP patients. While I have always empathized with caregivers, my energies have been limited to patients.
I have come to the conclusion, however, that caregivers within the PRP global community should organize an informal support group within our support group. Something as simple as PRP Caregivers.
- Every parent of a minor child diagnosed with Juvenile Onset PRP is a caregiver.
- There are spouses and partners who have become caregivers
- And the are daughters and sons who have rallied in support of a PRP parent.
Nov 9 — Free Aquaphor … Tubs by the case
For the past eight years I have posted information about Beiersdorf and their incredible program to help families in the United States and Canada who use large amounts of Eucerin® and or Aquaphor®.FREE Product Program in USA
As long as specific instructions are followed, Beiersdorf will send a free case of the product (twelve 396 gm containers), CLICK for details.
FREE Product Program in Canada
Beiersdorf Canada Inc. offers a similar medical donation program for qualifying patients to obtain a complimentary case of Aquaphor Original Formula (twelve 396 gm containers) on a bi-annual (two-per-year basis). CLICK for details.
ABOUT BEIERSDORF Founded in 1973, Beiersdorf Inc. is one of more than 150 international affiliates of the cosmetics company Beiersdorf AG which is based in Hamburg, Germany. In addition to Aquaphor, they market Eucerin and NIVEA brand products. SEE ORIGINAL POST
Nov 10 — PRP Parents Take Notice
On November 8, 2022, Erienne Purkis posted a link to an article published by the British Skin Foundation. The story provided a glimpse of her son’s heartbreaking PRP journey.
Kudos to Dr.James Miller, a specialist in inflammatory skin diseases and pediatric dermatology, and his “connections” at the British Skin Foundation. It’s a fantastic article that Trent’s dermatologist helped make happen. READ ARTICLE
PRP PARENT ALERT?
As I read about Trent’s PRP journey, I was reminded that the parents of children diagnosed with pityriasis rubra pilaris need to be better connected with other parents.
The PRP Global Database maintains 197 PRP profiles for patients diagnosed with juvenile onset PRP. An additional 399 PRP patient profiles are missing an onset age. A portion of these, in all likelihood, include patients diagnosed with juvenile onset PRP.
A few days ago I proposed the creation of a support group within our Land of Hope for caregivers. Today I propose PRP Parents & Kids — another ad hoc support group within the Land of Hope. This is an opportunity to share what parents have learned about juvenile onset PRP (diagnosis, treatment, and daily life as a parent or caregiver. Share any articles you feel a PRP parent might find worth reading and share websites worth visiting.
- CLICK HERE to check out PRP Children in the PRP Survival Guide. It’s where we start.
- Please email appropriate content for PRP Parents and Kids to editor@prpSurvivalGuide.org
- SEE ORIGINAL POST
Nov 11 — The PRP Cohort — 847 and Counting
The term “cohort” is derived from the Latin word “Cohors” – “a group of soldiers.” The term “cohort” refers to a group of people who have been included in a study by an event that is based on the definition decided by the researcher. Source: National Library of Medicine. National Health Institutes.The PRP Global Database hosts a total of 4,526 PRP patient profiles. However, only 1,517 are candidates for inclusion in the PRP Global Research Cohort. A total of 847 (56%) PRP patients are currently considered part of the PRP Global Research Cohort.
Cohort Qualification
- Any PRP patient, designated caregiver, or a parent of a PRP minor child
- Must provide core data. e.g., name, location. email address, onset date, onset age and current status.
- Must demonstrate a willingness to be part of the PRP Global Research Cohort by participating in PRP-specific research. The goal for 2023-2025 is one research project per quarter.
- Any PRP patient may, for any reason, opt-out as a member of the PRP Global Research Cohort
We can’t wait for a researcher to come knocking on our door. We must be proactive and knock on their doors! Our goal is 1,000 red dots. SEE ORIGINAL POST
Nov 12 — What Good Came from PRP? An Oxymoron?
An oxymoron is a figure of speech that combines contradictory words with opposing meanings, like “old news,” “deafening silence,” or “organized chaos.” Oxymorons may seem illogical at first, but in context they usually make sense. (Source: grammarly.com)
On November 2, 2022, a PRP caregiver Heather Hinsperger (Ontario, Canada) posted a question to the PRP Support Group. She wrote: “This may seem like a strange and maybe challenging question, but what good came from your experience with PRP?”
As I read the responses I was reminded that there can be a bright side to an otherwise oppressive experience.
The comments have been made available in the PRP Survival Guide. GO TO: https://prpsurvivalguide.org/what-good-came-from-prp/
As you ponder the bright side of the dark side, feel free to share. Either click EDITOR here or send an email to editor@prpSurvivalGuide.org.
Here are the first three responses. ALL responses have been added to the PRP Survival Guide.
Christopher G. Canning — Ottawa, Canada
It’s a wonderful question. For me, a renewed sense of gratitude for my family and friends and especially my incredibly strong and supportive wife. A new way of appreciating myself. A new way of taking care of myself. A new way of slowing down and listening to my body when it needs something. A new appreciation for the need for collective care. And this group! It doesn’t make the struggles easier but life gives us these opportunities sometimes. In grief and sadness we can find tremendous gratitude. SEE ORIGINAL POST
It’s a wonderful question. For me, a renewed sense of gratitude for my family and friends and especially my incredibly strong and supportive wife. A new way of appreciating myself. A new way of taking care of myself. A new way of slowing down and listening to my body when it needs something. A new appreciation for the need for collective care. And this group! It doesn’t make the struggles easier but life gives us these opportunities sometimes. In grief and sadness we can find tremendous gratitude. SEE ORIGINAL POST
Nov 14 — The PRP Global Community’s 5 Pillars
Pillar #1 — PRP AllianceThe PRP Alliance was established in February 2013 with the registration of prpAlliance.com. By November however, there was a website.
Pillar #2 — PRP Survival Guide
The PRP Survival Guide began in November 2013 as a section in the PRP Alliance website. I simply shared what I was learning from others. In May 2015, prpSurvivalGuide.org was launched and has evolved for over the past seven years. Today there are 548 published webpages and an additional 405 documents in need of closure, e.g., some should be published, some incorporated into other articles, and some deleted.
Pillar #3 — PRP Global Database
While under assault during my Acute Stage (March-May 2013) I was immobilized by fatigue. One day I realized that I had just enough energy to sit on my butt and use my computer again.
My first task was to review 29,000 emails in the email-based PRP Support Group archives. For over two months I sifted through each message and extracted core data, e.g., email address, location, patient or caregiver, onset date and age, diagnosis date and current status. I also noted ANY mention of biopsies.
In November, 2013 I launched the first PRP Census to over 1,500 email addresses I had collected months earlier. Over 500 bounced back as undeliverable. It was clear from the start that building the PRP Global Database would take time.
Pillar #4 — PRP Support Group (aka The Land of Hope)
Formed in 2008 by a Canadian and PRP sufferer who saw Facebook as an alternative to trading emails. In September 2013 he took a giant leap of faith, converted the PRP (Facebook) Support Group from PUBLIC to PRIVATE and asked the late Tierney Lynch Rattii to take on the responsibilities of an administrator.
Back then there were less than 100 members. While the original email-based PRP Support Group averaged 150 messages — a combination of posts AND comments) per month. In comparison, PRP Facebookers have generated 150 posts per month and over 2,500 comments per month. Technology won!
Pillar #5 — PRP Research
The onset of my version of PRP was August 8, 2012. I was initially misdiagnosed with seborrheic dermatitis, but mercifully diagnosed with PRP on November 27. At some point along the way I wanted to know if my experience — delayed diagnosis – was unique or common. I sent emails to 487 PRP patients and received 256 responses. I also learned two important facts:
- The timely diagnosis of PRP is an issue and I had the data to prove it.
- Armed with data that had never been collected before, I had something to talk about. I had something to share with my kindred spirits in the Land of Red & Shed.
Time for me to focus on Pillars #1, #2 and #3
At the ripe old age of 76 I need to sharpen my focus on fundraising and writing. With 20-25 hours a week to commit, I will be focusing on the following:
- Fund the PRP Alliance through December 2025 to include web hosting (GoDaddy), database technology (Claris International, Harmonic Data), email distribution and surveys (Constant Contact), etc.
- Upgrade the PRP Survival Guide to include improved search functioning and upgrading articles written prior to 2020 to include more contemporary patient comments. Lot’s of writing!
- Upgrade the PRP Global Database to make it a more valuable tool for PRP researchers, e.g. recruiting PRP patients for PRP research from PRP global community.
Help Wanted for Pillars #4 and #5
This is the time for others to step forward to join Christopher Canning, Murray Rose and Carol Terry in the day-to-day support of the Land of Hope (Pillar #4) and PRP Research (Pillar #5).