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Apr 30, 2009, 07:44 AM
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Member Since: Jun 2007
Location: Chicago, Illinois
Posts: 5,518
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Thank you ((Christina)) and ((Pachyderm))
Hopefully, my son will be receiving counseling for his PTSD through the VA. My husband and I have always had to deal with racist jerks, but it became worse after 9/11 - and even more so when politicians decided to highlight immigration problems in our country. I'm not sure how a counselor could help us deal with the racist attitudes and attacks from others.
My corneal specialist here in Chicago is the most familiar with my illness, but focuses only on my eyes. He's the one who diagnosed mom and remembers her very well - described her as "very bitter," then shuddered. When I asked him about treatment, he shrugged his shoulders and said "We haven't a clue - just have to watch you and see what happens."
There are literally only a handful of us throughout the world with this disease. Dr. Kiuru-Enari, a neurologist in Finland, conducted research, but she admits very little is known about this form of amyloidosis. There aren't enough of us on hand to study. The only literature out there focuses more on our physical appearance or simply documenting cases found throughout the world - never even a hint of treatment.
I've been told more cadavers are needed for study....I'm more useful to them dead than alive. 
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