First off, thank you for taking the time to be here.
Some history of my condition; when I was very young, I was diagnosed with pediatric non-hodgkins lymphoma. While trying to determine the diagnosis, it was discovered I have a genetic condition called Alpha-1 Antitrypsin Deficiency.
Alpha-1 causes my liver to create a malformed protein that is used in the body to protect the lungs.
Because of the malformation, it hangs out in the liver instead of being distributed and constantly causes damage. This also means my lungs don't have the same protection from toxins as healthy people.
Due to all this, people with Alpha-1 can end up with lung disease, liver disease, or both. In my case, it is liver disease that has progressed into cirrhosis even though I never drank alcohol or did drugs. This purely from losing genetic roulette. The only cure is a liver transplant, but getting one is not guaranteed, though my hepatology team is working very hard for me.
In the meantime, I have to keep a very specific and expensive diet, and do symptom management. The medical costs for symptom management is very expensive, even with private health insurance. This creates an unfair burden on my wife, son, and parents.
I'm not even supposed to drive because of the symptoms. If my current job didn't let me work from home, things would be even worse. However, I worry everyday could be the last I can work and will have to go on disability. Which will put an even worse financial strain on my family. Not to mention the lack of income that would come while healing from a liver transplant.
That's where this blog comes in. If I can get any support from anyone, it would be greatly appreciated.
If you would like to donate, there is a GoFundMe set up. However, if you would rather get something out of helping, i do have an online store with geeky products you can purchase and the profit goes to my costs.
Again, thank you for taking the time to read this. Even if you can't give or purchase, please share this around your social media. The more people this reaches, the more awareness we can create.
