Hi, I was actually just wondering if any of you have heard of amyloidosis. It's supposedely a very rare disease, and my Father passed away with what was probably amyloid of the heart 15 months ago. He was a week away from a heart biopsy that would have told if he had that, when he passed away from sudden death due to restrictive cardiomyopathy. Does anyone know anything about this disease? My Dad was in such wonderful health his whole life, and he was only 69, and very healthy, until he started getting swollen ankles, and shortness of breath, and was gone six months later. I think there's only a couple of things that can cause restrictive cardiomyopathy, and amyloidosis is one of them, but I was wondering if there are other causes. Everything I've heard and read says that this is such an obscure disease, we are still wondering how he could possibly have had that. He had a sickness as a small child, I forget what it was called, but he had a high fever, and I think I heard something like that can damage your heart. Also, my brothers and I are wondering if it's familial, the specialist in Stanford seemed to think it wasn't, but that there is a hereditary form of the disease, but that it's even more rare than the other kind. I was just wondering if anyone could shed any light on this. They couldn't even find out what was wrong with my Dad, because even though he had the shortness of breath, and swelling, all his tests came out fine, he had no blockages, or anything. The few days before he started swelling, he was down at our house, and working outside just fine. We even thought at first he might have gotten a virus from a mosquito bite, since he was working so hard outside, we live in an area where we have alot of mosquitos, but that dosen't seem to be something the doctors put any attention on. It's just so scary to think he could be so healthy, and then die of a rare disease in such a short time. Make sure to tell your loved ones that you love them, and don't pass up any opportunities to make their day! I would give anything to have him back, well, thanks so much for any help! Val

hay Val!

Unfortunately, I too have lost a parent from Amyloidosis. She was diagnosed due to protein in her urine. She was diagnosed and a year later passed away from Kidney failure/heart faliure. She did not undergo any procedure, and decided to deal with it naturally. Went into the Emerg one morning and passed away that afternoon.

She was a pure vegetarian and was a very healthy individual. She NEVER went to see doctors and dealt with things naturally.

Its hard to understand how come this disease is not more widely known about and even with our health care system as it is (im in canada), She was baffling doctors daily. Her kidney function was on the low side but other then that there was no other signs of the disease. On date of diagnosis she was told she would start showing the effects of the disease in 5 years and it Killed her in 1.

:(

I had lots of questions about her disease for her doctor afterwards, and was surprised at the lack of information they really do have. It was suppose to be a slow process so in a way it was good they went quickly. I dont think my mother would have done well with each organ individually shutting down before her heart!