FINALLY!!~~~~Variegate Prophyria!!

The story of Donavan

For years I have been wondering why my skin is so delicate. Constant painful blistering resulting in hyper-pigmentation of the affected area. As a person living with HIV/AIDS for 28 years, the darkened skin resembled an AIDS related cancer that presents as dark red/purple lesions just under the skin, Kaposi Sarcoma (KS). I felt very stigmatized because the blisters are right on my hands, where everybody could see. After seeing many dermatologists, I finally found one by chance that had an idea what was wrong. After several tests I was diagnosed with “Variegate Prophyria.” A genetic metabolic disorder characterized by deficient function of the enzyme protoporphyrinogen oxidase (PPO or PPOX). There is no cure. Only management and awareness will be with me now for life. Similar to HIV/AIDS. There is an extensive list of medications to avoid, as well as my favourite, SUNSHINE. My life has been full of health scares. With that, I tell my stories, educate and inspire others, (The best treatment for all disorders and dis-ease). Offering you my story now is already enriching my life and I thank you, very much. Be Safe and Be Well!