|
May 05, 2009, 08:25 AM
|
|
|
|
Member Since: Jun 2007
Location: Chicago, Illinois
Posts: 5,518
|
|
Hi Nightbird
I was diagnosed in 1996. It was confirmed in 1998. By 2004, I was deemed permanently and totally disabled due to this chronic, progressive and terminal illness - NO cure or treatment is available. I'm homebound, losing my eyesight, mobility, and now brain function. 
There are only FOUR people in the U.S. with my type of amyloidosis - a man in Boston, a man in Arizona, a woman in California, and me in Chicago. The only doctors who are knowledgeable and familiar with my type reside in Finland. They stopped research several years ago to focus on Alzheimer's disease.
A few years ago I attended a support group meeting for people with primary amyloidosis. It was depressing because none of it applied to me because I have the hereditary form. They have treatment options available - I don't. They have doctors who know about their illness and have treated others - I don't. They have funding for research and doctors conducting clinical trials - I don't, therefore no hope on the horizon for treatment. The meeting wore me out and left me feeling even more isolated. 
I'm not comfortable being outdoors or out in public. The stabbing pain in my eyes is excruciating due to the corneal erosions. It triggers the autonomic neuropathy and puts me at risk of either fainting or vomiting/gagging in public. Due to the facial paralysis, I'm not able to smile. When I attempt to smile at someone it looks more like a scowl, so people usually turn away from me. Children appear frightened and confused when they look at me, and their parents don't want them to speak or stare at me.
I'm glad to hear you were able to survive cancer and find a way to move on with your life. 
|