I Have Acute Intermittent porphyria Do you have it? Would like to talk to others with this disease?
Robbie9496
Would like to talk to others with this disease. I know it is a rare disease but it is effecting my everyday life.
1 Comment so far
Leave a reply
Robbie, if you live in So. California, there’s a good support group in this area. We meet twice a year and do our best to help each other feel less distant from other people. A rare disorder is not fun. I have VP and have experienced all kinds of mistreatment from MDs, etc. Nita