IamTheArm78
Greenlighter
- Joined
- Feb 25, 2017
- Messages
- 8
Hi, everyone. I'm age 39 & I have Wilson's disease, a rare genetic disease that can only rear its ugly head if both of your parents are carriers of the mutated ATP7B genes. The gene is inside every liver & works to expel excess copper from the body unless you have this disease, in which case the excess copper spreads throughout the body. I was diagnosed only a few years ago & began chelation treatment, but my liver didn't respond & now I have cirrhosis & need a transplant. Wilson's also affects my nervous & GI symptoms, eyes, kidneys, & brain.
Probably a long shot, but I'm wondering if there's anyone on this board who's in my shoes. I'm also up for talking to liver transplant candidates & recipients...or what the heck, anybody.
My support system is not huge, which is too bad since I try to help others when I can. Many people I know, some family even, have chastised, scolded, persecuted, misunderstood, deceived, shamed and basically have been treating me more & more like crap the sicker I become. People just do not understand Wilson's disease--I have copper in my nervous system & brain & it's harshly affected my short-term memory & gives me wicked mood swings. If I can manage a block or two I have to use my walker because if I don't I could get wrongly arrested for "public drunkenness," since many WD patients have balance issues.
Anyway, before I got this sick I was a filmmaker & a writer; after I fell ill I became a jewelry designer/maker. I also did philanthropic charity volunteering for the environment.
Hope you're all doing well!
Probably a long shot, but I'm wondering if there's anyone on this board who's in my shoes. I'm also up for talking to liver transplant candidates & recipients...or what the heck, anybody.
My support system is not huge, which is too bad since I try to help others when I can. Many people I know, some family even, have chastised, scolded, persecuted, misunderstood, deceived, shamed and basically have been treating me more & more like crap the sicker I become. People just do not understand Wilson's disease--I have copper in my nervous system & brain & it's harshly affected my short-term memory & gives me wicked mood swings. If I can manage a block or two I have to use my walker because if I don't I could get wrongly arrested for "public drunkenness," since many WD patients have balance issues.
Anyway, before I got this sick I was a filmmaker & a writer; after I fell ill I became a jewelry designer/maker. I also did philanthropic charity volunteering for the environment.
Hope you're all doing well!