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Showing posts from June, 2012

Andrew T. Story "Living life as a Young person with EPP"

Hello all I wanted to share a story with you his name is Andrew Turell he has EPP.   I thought you might want to read his story to understand what a young person goes through.  Enjoy reading and if you have a story you want to share please let me Amy Chapman know.

Type of Porphyria:
Erythropoietic Protoporphyria (EPP)


Andrew's Story

Although I was not diagnosed with porphyria until I was 10 years old, I have always suffered from the pain caused by spending too much time in the sun.  As far back as I can remember beach vacations and summer camp were always linked with itching, burning and sleepless nights.  Before I was able to verbally articulate the sensation, the only reason my parents believed that the pain was real was because I would continue to scratch my hands and face even once asleep (fortunately, I do not get blisters or other visible symptoms).

          I visited a number of doctors and was tested for a variety of allergies, but nothing stopped the reactions.  Every s…

Read about the HEME POOL Taken from the APF

Imagine that the pathway is actually a river of porphyrinsand porphyrin substances which together flow into andmake up a big red-coloured pool called the Heme Pool. Likea recipe, various ingredients (or porphyrin substances) areadded to this "river" at various stages to form the HemePool. Along this river there are several gates (which representdifferent stages of the Heme Pathway). These gates mustbe opened fully by an operator in order to keep the properflow of the river into the Heme Pool. Each gate has a differentoperator that has a unique key (which we'll call anEnzyme Key) for the gate that he must open. The job of eachoperator is to insert their Enzyme Key into their gate, and toturn the key fully so that their gate will only open part way,thus decreasing the flow of the river, resulting in a lowerlevel in the Heme Pool.One day the operator at the third gate comes to work andis not feeling well. Because of past incidences, we know thatwhen he wasn't well, he h…