Abdul Waheed Butt

Type of Porphyria: 
Congenital Erythropoietic Porphyria (CEP)

 

Hello I am from Pakistan. When I was born, I was completely all right.  After 2 months when my mother cut my nails, there was some water. My parents checked with a skin specialist who said that I had disease of skin, (Congenital erythropoietic PORPHERIA) Gunther disease.

Now my age is 21 , and there are no special effect on me .  Doctors say to avoid sunlight and that my body is completely fine.. Only my hands and mouth are affected from the disease.

If you can help me to get the treatment, I never forget your this faith work. God Bless U.