Monday, August 16, 2010

Porphyria Community

I started this blog for myself. A way to deal with the sickness, the unknown, to tell my stories to someone other than my husband over and over. But what I didn't expect was to find a community of other Porphyria patients and the caring and understanding that comes with that. I share my story in hopes of helping others. I post embarrassing pictures because I know most of you have been there too, and are wondering if this is an experience shared by other Porphs. My rash pictures in particular were posted because I couldn't find any images about Porphyria rashes besides the common VP blisters. I started this blog to put information out there that I couldn't find.

In return, I have found something that I couldn't find in all the research, doctor's visits, or hospital stays... a community of Porphyria patients. You have emailed me your stories, asked me how I'm feeling, and taken the time to read my blog and laugh at my pictures. You live in California, New York, West Virginia, and even Switzerland. You are my new friends and the only ones in my life who truly know what I've gone through.

For this post, I want to thank you. Thank you Porphs for reaching out to me and sharing your stories with the world. There's not much out there about this disease, and what is out there doesn't encompass the true nature of an attack... or the aftermath. So friends, please post comments here with an email address or facebook page that others can reach you at along with the type of Porphyria you have. This way, we all have someone to talk to, to share with.

For those on Facebook, there is an American Porphyria Foundation group that is really great. Hundreds of Porphs are there sharing treatment plans, answering questions, or just needing support.

Hope all of you are doing well! :)

1 comment:

  1. I am so looking forward to hearing about your DNA test! My urine is the same color as one of your pictures.