How bad is my version of PRP going to get?


Editor’s Note:  While all patients with PRP share a common core of symptoms, the specific symptoms that patients experience may vary dramatically.

PRP causes pink, red, or orange-red scaly patches on the skin — usually everywhere, but not always. But that is just the beginning.

Each PRP patient diagnosed with PRP — and their caregiver — must deal with a unique version of PRP. The intensity of each symptom can range from bothersome to beyond agonizing. How do we cope?

My father was a self-proclaimed optimistic fatalist. He would say, “Whatever is going to happen is going to happen — but it will turn out good in the end.” It worked in Vietnam, with two failed marriages and during my 20-month journey with PRP.

Members of the PRP Facebook and RareConnect communities have shared their stories. We gain strength from the courage of others. We take comfort in knowing that we are not alone on this journey.

There are two facts that seem irrefutable when one looks at the journey ahead with its challenges to body, mind and spirit.

First — no matter how bad you are feeling, someone else feels worse.

Second — there are countless stories of healing and hope. The light at the end of the proverbial tunnel are candles being held by hundreds of PRP patients and caregivers who have traveled the road you travel now.

As an online community we join hands — as best we can — and rejoice in whatever good news there is to share.

Whether a PRP patient or a caregiver, what has been the greatest challenge you have faced? What has helped you most on your PRP journey?

SG 03.00.01