04.00.02 Seven Ways to Embrace the PRP Community
Some PRPers will find their way to remission within a few years, some even sooner. Others must prepare for a much longer siege. No matter where you fall on the PRP Continuum, the journey begins anew today.
Here are the first seven steps on your journey.
1st: Read Frequently Asked Questions
Written by Lorna Roberts, a fellow PRPer and registered nurse, “Questions and Answers about Pityriasis Rubra Pilaris” has been the cornerstone of PRPer self-teaching since 2005. Her FAQs are grouped into six basic categories:
1.Description of PRP
2.Diagnosis
3.Medication and Treatment
4.Other Considerations
5.Day-to-Day Care and Information
6.In Conclusion
The PRP FAQs are a quick read and easily digested by any PRPer or surrogate who has searched the Internet and grown weary of hard-to-decipher medical terminology or repetitive information too often citing the same sources.
2nd: PRP Worldwide Census
As a rare disease, PRP has a limited number of “subjects” from which to collect data. Often misdiagnosed with psoriasis (7.7 million Americans), there are only an estimated 972 PRPers in the U.S. It is critical that you submit your PRP Census form.
3rd: Register your PRP-Savvy Dermatologist
Take the few moments required to register any PRP-savvy dermatologist you may have encountered thus far, e.g, the one who diagnosed you and those who have provided ongoing treatment.
4th: PRP Community Newsletter Archive
Curl up with a beverage that your meds will allow and read all the newsletters in the PRP Alliance Newsletter Archives. You will have a better understanding of today’s PRP Community and where it is headed in the future. The PRP Community newsletter began on April 1, 2014 and currently publishes on the 1st and 15th.
5th: PRP Facebook Support Group
With nearly 250 members, the PRP Facebook Support Group is an absolute resource that cannot be ignored by any PRPer with a Facebook account. A “Request to Join” will be greeted with an enthusiastic “Yes” by Tierney Ratti, the “closed group”administrator. If you do not have a Facebook account, this might be the reason to take a second look.
6th: PRP Meet & Greet
Once the dust has settled and you feel you are ready, contact the PRP Alliance and confirm the concentration of PRPers in your area.
‣Greater San Diego, CA: 15 active
‣The Netherlands: 17 active
‣Greater San Francisco, CA: 6 active
‣New Zealand: 3 active
An email will be sent on your behalf and a Meet & Greet scheduled at a mutually agreeable time and place. It actually is that simple.
7th: Share Your Version of PRP
With a prevalence rate of one in 400,000, PRPers are at the very bottom of the rare disease food chain. We must not miss any opportunity to build awareness, cultivate understanding and motivate enlightenment. Consider four ways to share:
1.Share the efficacy of your treatment plan. What worked. What didn’t.
2.Share techniques and products that bring you relief from pain, itching, sleepless nights, depression and all the other tormenting manifestations of PRP
3.Share what you learn from fellow PRPers with your dermatologist. The only way we can stay on their radar is to rise above the noise level. Based on the allocation of funding, the folks with psoriasis, eczema and dermatitis are noisy indeed.
4.Share your medical records, blood and saliva for bona fide PRP-related medical research, clinical trails, etc. This is especially true when research will improve the timely diagnosis and successful treatment of PRP.
Embrace the PRP Community and
the PRP Community will embrace you
JOn the Road…une 25, SWISS EDition, Page 8,