Special Deliveries for CEP Members

  • Friday, August 21, 2020

APF Executive Director, Kristen Wheeden, made some very special deliveries last weekend.

Thanks to donations from our members and the National Lighting Bureau, the APF has a generous supply of incandescent light bulbs to distribute to members. Traveling in a special APF donned van, Kristen delivered bulbs to several CEP members. The trip was a great success and we hope to get more bulbs out to our CEP patient community.

Should you wish to receive a supply of bulbs via mail, please contact Iany at: iany@porphyriafoundation.org(Sorry, we can only ship to the US & Canada).

Congenital Erythropoietic Porphyria (CEP) causes extreme photosensitivity to light. Individuals with CEP develop acutely painful scars and blisters if exposed to sunlight or artificial light. Incandescent bulbs emit less short wavelength blue light than other types of bulbs and they can also be easily dimmed so that only longer wavelength green, yellow and red light is emitted — virtually eliminating the wavelengths?that damage patients’ skin. Sadly, these bulbs are virtually impossible to find.