My name is Rob.  I am 45-years old and have a rare blood disorder called Erythropoietic Protoporphyria (EPP) or Protoporphyria.  My body produces high levels of Porphyrin.  Porphyrin, which is the part of your blood responsible for absorbing the sun and light for your Vitamin D intake, develops in red blood cells, bone marrow,  plasma and occasionally the liver.

The result of having too much Porphyrin causes me to have allergic reactions to light, both natural and artificial.  Two to five minutes of exposure and I can begin to have adverse reactions which include itching and feeling like my skin is on fire.  My exposed areas will swell up and can take three or more days of total darkness for the reaction to go away.   When people ask what my symptoms feel like, I compare it to having a magnifying glass over your body directly under the sun.

Although it wasn’t until I was 9 years old that the physicians figured out what was wrong with me, EEP is hereditary and I was born with it.  Porphyria is so rare that many physicians have little to no training in diagnosing EEP.   I would like to thank the American Porphyria Foundation for working so hard to change that.

Rob Saupe

You can read more about Robert’s journey with EEP here.

 

 

4 thoughts on “Erythropoietic Protoporphyria: I’m Allergic to Light Exposure”

  1. Beth Morrison says:

    Where can someone with this condition enjoy a summer vacation?

  2. Di Shaw says:

    My Grandchild is said to not be able to go out side only on rainy days. she gets sick and vomits and takes 3 and 4 days to recover. not so much with skin issues. heat from direct sun
    Is this the same thing?

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