Milder versions not so rare...
A novel synthetic hormone that makes certain skin cells produce more melanin significantly increases pain-free sun exposure in people with erythropoietic protoporphyria, a rare, genetic disorder resulting in excruciating pain within minutes of sun exposure. Two Phase III trials, conducted in Europe and in the United States by researchers at the Icahn School of Medicine at Mount Sinai and six other U.S. sites, showed that the duration of pain-free time in the sun and quality of life were significantly improved by treatment with afamelanotide, a novel synthetic version of a melanocyte-stimulating hormone. The findings were published in the July 2 issue of the New England Journal of Medicine.
"For patients worldwide, hiding from the sun for fear of debilitating pain is a fact of life, and for the first time we have an effective treatment for those who suffer from this specific porphyria," said lead study author Manisha Balwani, MD, Associate Professor of Genetics and Genomics Sciences and Medicine at the Icahn School of Medicine