Our mother Rose was diagnosed with Porphyria when she was in her early forties. Mom was born in 1929 in South Africa and married when she was 17. Photographs of her as a young woman revealed a lovely blemish free skin. However, over the years Porphyria particularly affected her hands and arms changing her lovely skin leaving red and black blemishes that progressively got worse.
As I am now a grandmother I am concerned that my grandchildren may have undiagnosed Porphyria or that they may pass it onto their children. Last year I asked mom a number of questions about the disease from her perspective as a sufferer of Porphyria. I am hoping that this blog will tell her story to benefit both our family and others who may either have this disease now or be diagnosed in the future. I have no medical training all I can do is relate what mom has told me.