Question:
I would like to know if anybody out there has devloped a blood diease called

Porphyria? it is a heriditory diease but you can have and never no it until a life changing event happens. in my cas i developed due to the dietary changes of RNY bypass. if anyone has info i would greatly appreciate it. i am 1 1/2 years post op down 120.    — Amanda P. (posted on April 14, 2003)

April 14, 2003
Amanda, I am only a little familiar with the condition, I can only tell you that it is a disorder characterized by increased formation and excretion of porphyrin which is a nitrogen containing compound that form respiratory pigment. That is the definition. The symptoms vary with the type. There are 7 different types that I know of, and the symptoms/complications range from light sensitivity and rashes to enlarged spleen and liver disease. It is a very rare, and as you said, "hereditary," condition. I suggest you speak to your MD as to which type you have, and then you can do some research on www.webmd.com. Good luck, I hope this helps.
   — Tina B.

April 14, 2003
Amanda, Several years ago, I was experiencing debilitating pain in my stomach, side, and back, and porphyia was my doctor's thought as to the cause. Fortunately my tests came back negative (turns out it was endometriosis and PCOS causing the pain), but while I was waiting for the results I researched it on the internet. I found countless sites, and personal webpages devoted to the disorder. There is a great support base out there, with a lot of people willing to share their experiences. Best of luck to you in finding the information you are looking for.
   — Kelly B.