Amyloidosis- is it survivable?

[Dasha]

I would love to talk with anyone who has survived amyloidosis,i've been given info by specialists and i always feel there is something they are not telling us.My other half has this condition.We only found out about a month and a half ago.He is on week 4 of chemo.Thanks.

[Ron50]

Hi Sharon, When I thought I may have it I did as much research as I could about it. Strangely I got a lot of information about it from an author whose books I enjoyed,Robert Jordan. He suffered from it for years. I am no doctor but from what I understand there is no cure at this point but sufferers do go into long term remission. What I understand of the disease is that the body produces amyloid proteins. Normal proteins after a period break down and the body re-uses the bits and pieces to make new cells. Amyloid proteins do not break down and are not screened out of the blood stream and over time they are deposited in the organs including the heart ,kindneys,liver brain ect ect. Because they do not break down and are not eliminated the key to survival is to stop the body producing any more. If this can be achieved the patient can go into long term remission. I don't remember the exact name of it but there is an amyloidosis support site on the Australian net . Good luck to you both,,,Ron.

[Dasha]

Thanks for your well wisses Ron. The support site i was given to me at the cancer centre is... http://www.leukaemia.org.au/web/index.php The specialist also told us the brain is the only part it doesn't affect.I hope she's right. Good to hear you don't have it,what was your eventual diagnosis?