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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 porphyrins and porphyrin substances which together flow into and make up a big red-coloured pool called the Heme Pool. Like a recipe, various ingredients (or porphyrin substances) are added to this "river" at various stages to form the Heme Pool. Along this river there are several gates (which represent different stages of the Heme Pathway). These gates must be opened fully by an operator in order to keep the proper flow of the river into the Heme Pool. Each gate has a different operator that has a unique key (which we'll call an Enzyme Key) for the gate that he must open. The job of each operator is to insert their Enzyme Key into their gate, and to turn the key fully so that their gate will only open part way, thus decreasing the flow of the river, resulting in a lower level in the Heme Pool. One day the operator at the third gate comes to work and is not feeling well. Because of past incidences, we know that when he wasn't well, he h…