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Sunday, Feb. 02, 2003 11:46 a.m.
I'm feeling
It has come to my attention that i have mentioned DBA. Well, You see I started this diary with family and friends in mind. Just little notes to keep them posted as to what I was up to. Well you see I didn't really think anyone was reading this. Now I see I was wrong. The people who know me know what DBA is. But the rest of the world does not. So this is what it is. DBA (Diamond Blackfan Anemia) It's a rare blood disorder. Only about 700 people world wide have it. 500 in the US and 200 in the rest of the world. Mostly in countries like, Holland, Germany, Scottland ect... To tell you the truth it's hard to pinpoint, doctors aren't realy sure themselves. What I can do is tell you a little about myself and DBA because we are all somewhat differant. I was born with DBA and was diagnosed at 6 months. The major problem in a nutshell it that I don't produce any red cells. Some DBA patients produce some. Not me. So growing up I was on steriods (made me look like a cabbage patch Kid) I am also very tiny for my age (4'8") and shrinking. I've never been taller then 4'10". Children love this about me, I'm thier height. I now recieve blood transfusions every 4 week's to stay alive. Due to so many blood transfusions. I have to take Desferal. Desferal is needed to get iron out of my blood (no they can't take it out before hand. We wish they could). Any whoo this med need's to be taken trough a needle in the belly or in a Portacath(placed in the chest) Mine is through a portacath. This is done for some people over a few hours. Mine is over 14hrs. The pump I use weigh's a ton (exageration) but it is made for a much bigger person. There is a pump that is smaller that I am unable to get because my coverage say's."You have a pump we will not spend $1,200 for a new one" They refuse to understand that I AM 4'8" AND WEIGH 98 POUND'S. Stupid hmo. So we are saving to get one ourselves. That is why I am selling my stuff on ebay (just setting up my account) I'll let you know when. Anyway that's the short version. So that's a little bit about DBA. I welcome any and all guestion's no matter how silly you my think they are. Please feel free to ask. You can also look it up at www.dbafoundation.org
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