A picture that’s really
worth a thousand words.
Forget the one-of-a-kind red snowflakes. Forget the one-of-a-kind red fingerprints. Even forget the mythical unicorn with the red snowflake on it’s neck. All have been images used to illustrate the rarity of PRP.
Now think umbrellas. One red umbrella in a sea of black umbrellas. Not quite one in 400,000, but the message is crystal clear.
As PRP patients we know the isolation of being rare. The daily challenges of body mind and spirit are the SIGNS we experience for ourselves.
- We see our own skin.
- We feel our own pain.
- We experience the burden of PRP and the isolation that goes with it.
Our dermatologists know what they know about PRP based on:
- what they learned in medical school,
- what they observe during our clinic visits,
- what they learn from us if we are inclined to share, and
- what they learn from us if they are inclined to listen.
And then there is a smaller cadre of research dermatologists who are both clinicians and researchers. Unfortunately, the rarity of PRP provides little incentive for dermatology researchers to focus on us.
That said — What if we provide an incentive to research PRP! For example, a research cohort of over 1,000 patients diagnosed with PRP might get the proverbial ball rolling.
That said — What if we provide an incentive to research PRP! For example, a research cohort of over 1,000 patients diagnosed with PRP might get the proverbial ball rolling.
The PRP global community has an opportunity to become a catalyst for PRP research if we can inspire 1,000 PRP members of the global community to answer 15 questions. Please consider the PRP Onset to Diagnosis Survey.
Now imagine an image awash in a sea of red umbrellas. That’s a cohort!
