Matt Burns

First post: Feb 27, 2016 Latest post: Mar 5, 2016
Welcome to Matt's CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.  Please know that any donations made here will not go to Matt and his care, it will go to CaringBridge to maintain their websites - we have set this page up to share Matt's story and help others learn about this rare disease that has destroyed his liver.

During the Christmas holidays, after I had been sick for a few weeks, my family realized something was very wrong and did not feel we were getting the answers we needed from the doctors who were treating me. I was getting worse and worse, so two days after Christmas 2015, my family took me to the Yale New Haven Emergency room. Their doctors quickly admitted me to the liver center and told me, that very first day, that they would get the answers we so desperately needed. After a battery of tests, including genetic testing, we were told I have a very rare genetic disease called Alpha -One that has been destroying my liver for years. I am 36 years old and never knew it was happening, the doctors told me that it can go on for a long time, until finally, the liver just cannot function anymore, and the symptoms I now have, occur very rapidly once the liver becomes so damaged that it cannot function anymore and that "tipping point" is reached.

Unfortunately, my liver is so damaged that I am already in end stage liver disease and cannot survive without a liver transplant. My parents do not qualify as living donors, and it is very difficult to find other living donors, so I am now on the list for a donor who has passed.

It is difficult in CT to get a transplant as there are so few donors, the doctors say that Florida, New Orleans and Atlanta get the most liver donations and I will have a much better chance of getting a liver and surviving, if I can go to one of the hospitals that do more transplants. Insurance is now an issue as my CT insurance will not cover the other hospitals, so we are trying to figure out how to make it work, everything is very complicated! I am getting sicker and sicker, but not giving up hope- just yesterday, after the doctors checked my blood work, they readmitted me to the hospital.

My disease- Alpha-1 Antitrypsin Deficiency (Alpha-1) is a genetic (inherited) condition – it is passed from parents to their children through their genes. Alpha-1 may result in serious lung disease in adults and/or liver disease at any age. Both parents have to be carriers, but now that we know both my parents carry it, all my relatives, on both sides of the family should be tested.

The Alpha-one Foundation provides free, anonymous genetic testing, you can find out how to do this right on their website.

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