I would like to thank him for even writing about porphyria it is so rare our goverment does not want to be bothered by it.
I would like to correct some things in his article. the treatment he talked about is called heme and it is produced by one company and the cost went from 200 dollars a treatment to 700 a treatment when this new company purchased thr rights to make it here 2 years ago. the heme treatment is not that good it helps a small amount of people but it is the only aproved treatment in this country. there are many strains of it and each strain effects you in a differant way and it even effects women differant from men. it can be a very savere problem my grandmother died at 34 from it. it can take your ability to breath away your ability to think away and your ability to control your muscles.
there is no known cure or even working treatment. there is better treatment and research for aids victims then there is porphyria victims.
the worst part is doctors it is so rare most doctors never heard of it so when you tell them what your symptoms are they think your are crazy and up untill the 70’s most people with sever porphyria were put in mental homes.
we could use help of the public putting presure on the goverment for research in testing in treatment in cures.
thank you
mike