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Monday, August 11, 2008

Porphyria the unkown disease.

Porphyria is a rare disease that starts with your blood. There's a substance in your blood called heme that makes porphyrins, somehow porphyrins contribute to blood flow. People with too many porphyrins have porphyria. Porphyria causes a lot of different problems. There are eight different types of porphyria. The main ones are the acute porphyria's. In these porphyria's there is severe abdominal pain, I like to explain them as sharp stabbing knife pain, or like having an operation without the anstethia. It's not little stomach pain, it is at times intense unbearable pain. Then they have sensitivity to the sun. Something about the rays of the sun affects people with porphyria. I have porphyria myself and I know that when I'm out in the sun too long I start to feel strange and I can't think clearly and I start having the stomach pains. It brings on a whole new world of pain and sickness. Also there are mental side effects and nervous system affects. Such as worry, fear, and nervous side effects, like panic attacks. Thankfully I know a God who heals and has kept me sain throughout all these years. I use to get a horrible fearful feeling that would come on all of a sudden and I'd feel like the world was coming to an end or like I was going to die right then and I'd be hysterical. I'd wake my mom up at night and have her pray for me cause I was so hysterical. Also I have a lot of anxiety and panic attacks. I get real frustrated and start feeling all anxious and then I start hyperventilating and feeling hysterical. There are a long list of medicines that porphyria people have to stay away from. Also there is other triggers such as sun light, smoking, alcohol, and certain foods (which may be different in each person) that will cause attacks. Menstrual cycles for females will cause attacks. Mine were horrible. Right now my periods are all messed up and I don't have a period. But when I use to I would pass out, my blood pressure would drop really low, I would have horrible pains all over my body, Not a place in my body didn't hurt, I would throw up and be dizzy when concuss. It was horrible and on occasion I have been admitted to the hospital because of my periods and I passed out in the doctors office more than once. There's a lot of things that can go wrong with porphyria. Most people do not understand what it feels like or what people with porphyria goes through on a daily basics. It's difficult to see friends and family who live successful lives and don't understand our circumstances. When were trying our best but are shot down by our own blood making too many porphyrins and causing us to have horrid pain beyond description and panic effects. And they wonder why it's hard to hold down a job and rise to the top like all the other successful people do.

2 comments:

Anonymous said...

Hi Rachel, its very nice to see that someone else has Porphyria too.
There is a new website, which is all about Photoprotection. Porphyria goes into it. http://photoprotection.clinuvel.com

would be nice if you check it out and post your blog in the Xptise disussions. may you find some other fellow sufferer.
cheers

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- Norman