A Treatment Plan is more than drugs

03.00.03  A treatment Plan is more than drugs

It’s time to refer PRP Patients to the PRP Alliance

By Bill McCue, Patient Advocate

My iPhone rang. It was a life-altering moment when my dermatologist’s office called to confirm my diagnosis: pityriasis rubra pilaris. It was November 28, 2012.

At first there was a feeling of relief — almost euphoria — to finally know what had been happening to my skin since the first week of August. I was also encouraged by a referral to the University of Texas Southwestern Dermatology Clinic in Dallas for ongoing treatment.

I asked the voice from Dr. Golden’s office how to spell pityriasis rubra pilaris.

p-i-t-y-r-i-a-s-i-s-r-u-b-r-a-p-i-l-a-r-i-s

I soon discovered, however, that the proper spelling of PRP was all I would learn. Fortunately, that was enough to get started.

I wasted no time eliciting the help of Dr. Google’s search engine where a seemingly  limitless supply of documents about PRP were archived. After following the first 20 links, it became apparent that there is only so much anyone can say about an über rare skin disorder information. How do you spell REDUNDANT?

As a newly diagnosed PRP patient, I remained uninformed, befuddled and overwhelmed at the very time I should have had clarity.

Then I found it. The PRP Support Group. Formed in late 1997, the primary goal of the PRP Support Group was to “provide a forum for people to share information about PRP, including their experiences, anxieties and treatment options, and to provide mutual support to each other.”

I immediately became a subscriber to “The List” and began reading about PRP from others. I was no longer alone. I had a rebirth of hope.

On April 8, 2014, exactly 20 months after a dime-sized red spot had appeared on my forehead, I was declared in remission. As I thought about my own journey from onset to remission, I recognized the unnecessary confusion and angst that accompanies a diagnosis of PRP.

With an oft-quoted prevalence rate of one in 400,000, there are only an estimated 800 PRPers in the U.S. While we aren’t as rare as unicorns, our patient population has not commanded attention over the years. Only one in 20 dermatologists will ever diagnose PRP. Even at large teaching hospitals, a patient with PRP is a rarity

The adage “Absence makes the heart grow fonder” may have some validity in matters of love and romance, but not when it comes to a rare skin disease like PRP.

A Registry of Dermatology
Patient Organizations?

There are reportedly 3,000 skin disorders of which and indeterminate number are rare. A rare disease, as defined in the Rare Diseases Act of 2002, is any disease or condition that affects fewer than 200,000 people in the U.S.

There is no single source for a comprehensive list of dermatology patient organizations. The first step in filling this void is to build a web-enabled database. At a minimum, the information should include the following:

✴Name: PRP Alliance, Inc.

✴Website: prpAlliance.org

✴Contact email: info@prpAlliance.org

✴Mission Statement: The PRP Alliance is a patient advocacy organization. We advocate the timely diagnosis of  pityriasis rubra pilaris, the identification of successful treatment options and increased PRP-specific research.

A Registry of Dermatology Patient Organizations could also include additional information, e.g., 501(c)(3) status, contact names and telephone numbers, etc.

Referral to “the registry” by dermatologists to become sop?

Just imagine if the next adult or child to be diagnosed with PRP is given a “prescription for ongoing support” that includes links to PRP Alliance and the PRP Facebook Support Group.

Dr. Shadi Kourosh, Director of Community Health at Massachusetts General Hospital in Boston, is an unabashed advocate of a dermatology patient organization referral initiative. “Many patients have reported that being connected with a patient advocacy group has helped them to live more successfully with their skin diseases,” she explains.

The PRP Alliance joined the Coalition for Skin Diseases (CSD) and the National Organization for Rare Disorders (NORD) to access the experience of kindred spirits. We have become active as a patient  advocate with the Academy of Dermatology for the same reason. We can make our presence known. We finally have a seat at the table.

Published in On the Road…October 2015