06.01.02 Advocating PRP Research
As published in On the Road… (April 1, 2014, page 3)
by Bill McCue
In Search of Answers
From the outset, the 2014 PRP Worldwide Census was designed to answer four questions to satisfy my own curiosity:
1.What are the variations in onset age? I was 66.
2.What are the variations in onset symptoms? I had a blemish on my forehead.
3.What are the diseases that delay the timely diagnosis of PRP? I was misdiagnosed with seborrheic dermatitis.
4.Are there really 792 “active” PRP patients in the U.S. and who are the 15 active PRP patients in the Dallas-Fort Worth “Metroplex” besides me?
The PRP Worldwide Census is not medical research. It is primarily a simple survey to better define our own PRP community. The PRP Census does provide, however, a snapshot of a patient population ripe for medical research.
Onset Age
Why is onset age important? Seriously, I don’t have a clue. Personally, I wanted to know more about the experiences of the PRP patients in the “60 to <70” group. Perhaps the Onset Age data will inspire a medical research project somewhere? Who knows? And that’s the point.
Onset of Symptoms
The PRP Census effort has already chronicled the onset symptoms for 477 PRPers. The range of symptoms and where they appear underscores how each case of PRP is as unique as a snowflake.
Words used to described the onset symptoms:
•A total of 294 patients used the term rash (201), spot (97) or blemish (19)
•A total of 70 used the term itchy, and 57 used patches, shedding, dandruff, bumps, sunburn and peeling.
Words used to describe location of symptoms:
•A total of 283 patients indicated the location of the symptom.
•Head (168) which includes: scalp, face, forehead, head, eyes, ears and nose
•Upper torso (86) which includes chest, back (36), shoulder and torso
•Upper extremities (66): hands, arms and fingers
•Lower extremities (38): feet and legs
Misdiagnosis
The timely diagnosis of PRP has always been a front-burner issue for me. I was misdiagnosed, mistreated for three months and hospitalized diagnosed with PRP. A total of 280 PRPers confirmed one or more misdiagnoses before their “official” PRP diagnosis. The most prevalent misdiagnoses included psoriasis (125), atopic dermatitis (71) and allergic reactions (39). Other misdiagnoses included pityriasis rosea, lupus, hives, Grover’s disease, pemphigas vulgarism and even scarlet fever. There is work to be done by the PRP community to ensure more timely PRP diagnoses.
Status: Active vs. Remission
The PRP Census effort has confirmed 206 active PRP patients, 430 in remission and 19 deceased. Of the 206 reporting “active”, only 133 are in the U.S. which represents only 16 percent of the estimated 792.
PRP Census forms will continue to be available at www.prpalliance.com.