Why I Am Doing This

I have several reasons for writing a blog, some selfish, some selfless. I want to become a writer and this is good practice. But mostly, I hope that someone or perhaps several someones will find benefit in reading my story. I know that when I was newly diagnosed, a mere 5 months ago, that the first thing I did was what anyone would do, go online and look for information. At that time I googled the term "pityriasis rubra pilaris" and I pulled up information that was 10 years old. This in my opinion is just sad. I had to really dig in order to find any good information and it was only by chance that I stumbled upon the PRP Alliance Website I don't even recall how I ran across the site but it was buried on some other site. The PRP Support email list had no recent relevant information either. Today, thanks to the efforts of Mr. Bill McCue and others, finding information about PRP has become a bit easier thanks to some higher ranking sites linking the PRP Alliance site. I hope to one day see the PRP Alliance site at the top of the list when you enter the term "pityriasis rubra pilaris" into any search engine. Thanks again to Bill McCue for all that you do to advocate for the PRP community as a whole. So the answer to my original question, I am doing this to help those who need assistance navigating this condition. It is scary and frightening to discover that you have PRP. Not knowing what to expect (it changes daily for awhile). Thinking that you could potentially have to endure the condition for years. Not being able to control certain aspects of your body, how cold you get, how much skin you shed. The self-conscious aspects, am I flaking everywhere (yes), if you are a business person and shake a lot of hands (are you contagious dude), and the host of other social aspects that you deal with. Will I always be able to work (some have to stop). Fitness aspects (difficult to run anymore when you can barely walk some days). Marital aspects (does my spouse still find me attractive), sexual aspects, etc. I know that for me, PRP has been a life altering encounter. I do my best to be like I was before, but some days I can't and this can be frustrating. If you are someone who has been recently diagnosed with PRP or are a caregiver of someone who has, do yourself a favor and look over the PRP Alliance site, and join the PRP Facebook Support Group, you will be welcomed with open arms because after all, we are all in this together, and we can learn more together than we can by ourselves.

Peace