Erythropoietic Protoporphyria (EPP)
My name is Richard Buswell and I have Erythropoietic Protoporphyria (EPP).
I was born in 1948 but was not diagnosed with EPP until I was17 years old, along with my brother, at Cancer Hospital in London. As a child, my brother and I endured the excruciating pain and suffering of this disease and we would not wish this rare disease on anyone.
As children our hands would swell and cause excruciating pain. Physicians told us it was just “sun-burns on our hands.”
At night, we would hang our hands out the window or place them in cool water to calm them down. At that point in time, there was not air conditioning in the UK.
I am now 70 years old and live in the United States with my dog. For the last 5 years, I have been taking Lumitene. I am hopeful that Scenesse is approved by the FDA. Thank you to the American Porphyria Foundation for everything!