PRP Survival Guide


Issues related to communicating
with family and friends

The PRP Survival Guide is designed to be a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. Only we are best positioned to harvest that knowledge.

Share what you have learned about the ways PRP has affected communication with family and friends. Share articles you feel might be worth reading or websites worth visiting. Here is the first question we ask.

How has PRP affected your communication with family and friends?

Editor — On May 2, 2017, the following comments were shared by members of the PRP Facebook Support Group. If you are a member, please CLICK HERE to access the original post.

Barbara P ( LaGrange, GA)

I get so tired of people (mostly family…in law family) trying to diagnose me. Trying to tell me it’s in my blood and I need to see a “disease doctor.” Telling me that doctors “have to know” what’s causing this. Telling me I probably have leprosy. Telling me I have to be doing something to cause it. We had this discussion when I got this the first time back in 2013….They already know what I’ve told them. I just try to explain again…but they talk over me not listening

Carol L (Jacksonville, FL)

Try to remember they think they are helping. They definitely are not, but usually people like that think they might be. It’s because they care, I truly believe that. People can’t imagine that it’s not treatable in the usual quick, fast way of most diseases.

Jean N (Boston, MA)

I also believe people are just trying to help. I have had so many people tell me so many things about what I should try or do that at this point I just listen to them and smile. Each day is different for all of us with PRP so people without this disease really can’t understand what we all go through on a daily basis.

Traci W (Seymour, ID)

I am sure we all know exactly what you are dealing with. I try to look at it as a learning opportunity. Mainly because telling them to buzz off (I know of another word) is kind of frowned upon. Reading something off of the internet does not give them the ability to diagnose, nor does “well, so and so says it could be this and so and so ( you know, the other one) has the exact same hung…..
In my case, I know the intentions are meant to be genuine and helpful, I just get tired of it….tired of it all.

I just try to explain in layman’s terms what is going on. I hate the stares. Can’t stand it! People do not realize how rude they are, even if they don’t mean to be. I have just started saying yes to the “sunburn” question.

Irma G (Newport News, VA)

My sister was afraid that I had a flesh eating disease.

Deborah B (Kannapolis, NC)

Heard that one, too, and leprosy!

Gary R (Toronto, Ontario, Canada)

My standard statement now is , it’s not contagious, it’s my own immune system attacking my own skin. Maybe not a 100% accurate, but people seem to understand that concept.

Jan T (Ringwood, NJ)

I tell people it’s not contagious and no one knows what causes it, and that the causes are probably not the same for everyone. They also like to know that it’s not a fungus, and not Lyme, bed bugs, or shingles. Only my daughter jokingly mentioned leprosy.

Marianne B (San Diego, CA)

No one really understands what we PRP people go through. They look at us and only see red people (pretty red people) but its so much more than that. I prayed novenas to get me through.