Alpha-1 Antitrypsin Deficiency

All my life I have dealt with being, essentially, constantly sick.  As a baby, I was so sick and the doctors did everything they could think of, but eventually gave up and told my parent to just enjoy the time they had with me.  Whether it was my natural stubbornness already developing or something else, I kept on going.

Years went by and I seemed to always be sick.  It was just diagnosed with asthma and allergies.  But in Junior High, there was the fateful day that I did nothing but sleep for 22 hours.  I only got up and hour for lunch and hour for dinner.  My doctor did everything to figure what caused the sleep.  I remember going in every week for what seemed like a couple of months to have more and more blood drawn to test for even the most exotic diseases I could come across in Southern New Hampshire.  When everything he tested for came back negative, I was sent to a lung specialist.  It was then that I found out that most of my problems were due to Alpha-1 Antitrypsin Deficiency.

I was born a ZZ and I still boggle doctors to this day because the the liver cirrhosis I developed as a child was so severe, I shouldn’t have survived this long (actually, in the words of the doctor who told me this, she said, “You shouldn’t be alive!”).  But each day, of each week, of each year, I go on doing what I can.  Sometimes pushing myself more than that.  Like I said, I’m stubborn.

In January of 2010, I finally received a liver transplant. The effects of the disease should be halted, but who knows what the future may hold, so I’ll keep going on each day, of each week, doing what I can. This page is meant to be a sort of resourse for those interested in finding out.

Links

Alpha-1 Foundation – A group looking to help educate people on the disease and a foundation working to fund research for treatments and a cure.  It’s surprising  that since 1 in 2,500 Americans have this disease, there are many doctors that don’t know anything about it.

NIH Page

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2 Comments

  1. Wow. That’s a helluva lot for anyone to deal with. I tend to tell people that I’m not looking for sympathy but for empathy. If you ever need to vent, feel free. It can be frustrating when there are things you want to do but can’t. *hugs*

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  2. Take care, Will. Thank you for sharing this with us. 🙂 You just educated me, and I always appreciate that. Now I know this, I’ll add you to those I like to send healing to. You’re a kind person I’d like to see stick around a lot longer.

    *hugs*

    Louise xox

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