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Sep 28, 2007

My Life So Far

When I was 15 I went on a trip to the beach, after I came back my hands swelled  and my mom thought maybe I was bitten by somethink and took me to the er on Vandenberg AFB. No one could figure out what was wrong but I was given a shot in each arm of benedryl to decrease the swelling. Then I was referred to a specialist who ordered blood tests to find out why my hands swelled up. I was diagnosis with EPP (Erythropoietic Protoporphyria). It wasn't until I was in my 30's that I found out exactly what EPP is and how it has changed my life to know what I know now. It affects the porphyrin metabolism and is characterized by abnormally elevated levels of protoporphyrin IX in erythrocytes (red blood cells), and a sensitivity to visible light. It is caused by an enzyme defect during the last step of heme synthesis. When the insertion of the activated iron molecule into the middle of the protoporphyrin ring development and caused by a partial deficiency of the enzyme called ferrochelatase. The treatment: At the time of diagnosis I was told to eat carrots every day; the beta-carotene is supposed to improve the tolerance to sunlight. Now at 15 yr old who wants to have to eat carrots every day. I wasn't until after a few unbearable experiences I found sunscreen to wear making easier when I went out in the sun. But I didn't always remember to wear my sunscreen and getting a sunburn isn't like what other people without EPP experience. My sunburns were no fun. When I get sunburned my face, hands, and feet swell. They itch and burn terribly in fact it feels like my skin is on fire you just can't see the flames. Thank God for benedryl being sold over the counter. I buy it for times I am stupid enough to forget to wear sunscreen. Which must be at least 50 SPF. Doctors found that sunlight in your life helps your brain process seritonin which is essential for mentally happy balanced life; but sunlight is my enemy. After my son was born I was diagnosed with major depression, then low thyroid, then high blood pressure, and finally diabetes all of which I take medication to get under control. I have also tried but unsuccessfully to keep myself on a diet and exercise program. Some day I hope to be more successful so I can get myself off all the medication. I also have Sleep apnea and have to sleep with a CPAP machine that gives me  Oxygen while I sleep (I snore; practically all my life) all these issues can be traced back to EPP. My doctor recently told me that EPP affects every cell in body much like MS does. Not much is known about Porphyria but I have researched it online and found websites to help me understand it better. There is a 50-50 chance of my passing this on to my children my daughter tested as not having it and my son doesn't look like he has this problem (at least not yet) that kid goes outside and doesn't come back unless he is hungry or it is dark. But I think I may get him tested just to see any way.

Aug 15, 2002

About My Personal Life

Husband Tom Daughter Amanda 18 Son Tommy 10