What is Amyloidosis
Primary amyloidosis occurs when the body's antibody-producing cells do not function properly and produce abnormal protein fibers made of antibody fragments. Some people with primar...
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Secondary Amyloidosis
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My husband has just been diagnosed with AA Amyloidosis. He is an otherwise vibrant 46 year old, and we have two young children (13 and 9). After seeking the "best" doctors at both Mayo in Rochester, MN and Boston Medical Center, physicians at both centers were unable to come up with the root cause, which is what is necessary to treat this disease and slow the progression.
We are now flying to England in hopes of getting more help there. They have a nuclear imaging device not available in the US which will perform a full body scan and help physicians determine the root cause of the disease. We have been told it is his only hope for stopping the progression of the disease. Is anyone out there familiar (or dealing) with AA Amyloidosis? It is quite rare in the US, and while we believe we are doing all the research and everything in our power to educate ourselves and fight this disease, there is still much unknown about this horrible diease. We would appreciate any feedback from anyone dealing with AA Amyloidosis. Posted on 11/01/09, 11:11 am |
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Hi, I am so glad you are going to England. I just lost my mom to Multiple Myeloma with secondary Amyloidosis. I had researched every where as we had never even heard of the disease. My dad was ready to fly her to Boston for possible treatment. Unfortunately, she was already to ill to fly. PLEASE do not take NO for an answer. Keep fighting. This disease can be maintained with the proper treatment. I will pray for your husband and your family. Please keep fighing until you find the correct treatment. God Bless. 
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