Today I am very discouraged reading some of the stories about Porphyria on the net. I have Porphyria and I have many online friends in my support group so have heard many many stories but the ones posted in blogs just seem so extreme when it comes to certain things. I welcome people to post their own story and you can do it annonymously. Don't ask for money and don't link back to a website that asks for donations. Don't claim that even the light from the computer causes attacks if you are known to be a regular in an online support group.
Subscribe To
Posts
Comments
About Me
- Queenofhearts
- I became the Queenofhearts when I met my husband who is a professional magician doing card and close up magic. He pulled a trick on me and the Queen of Hearts became my card. We had fun with it and it just stuck. In no way does it have anything to do with Porphyria although those in the support groups know me by that name.
No comments:
Post a Comment