Amyloidosis Support Group

Hi,

Can't tell you how one gets this disease, not really known.

Disease is treatable but technically not cureable, can be put into remission.

Best advice...go to amyloidosissupportgroup.com...you will get help, answers, etc. Group is led by Muriel Finkel who can also be reached directly at muriel@finkelsupply.com...she is the best source of info I know. And, join the group...there are postings from patients, caregivers, etc. daily

First of all it really depending on where the amyloid is. He needs to be seen by a person very knowledgeable in amyloidosis. Life expectance is very different fromperson to person. Check out the website below and they can help Im sure, and if your in Canada the link is www.thecan.org

If your in Canada, I would be interested to know where your from, I can maybe give you a doctors name, since my dad is also dealing with amyloidosis. Good luck!

tell us more - what kind ie primary, secondary and where the disease is located in his body - the disease is rare and is different in every patient - your best support will be the medical team and the amyloid support networks. My husband has had it for 6 years with the first two being diagnosed with another disease so that delayed treatment. My husband is only 55 and is struggling daily and now we have a palliative team working with us at home to care for him. But you must be an advocate for your dad and ask lots of questions and do what your doing by searching for support. God bless - your family will be in my thoughts.

I"m sorry for your ordeal. My father in law has amyloidosis, and multiple myeloma & lymphoma. His doctors are more concerned w/the amyloidosis than they are the two cancers. My father in law's is a build up of protein in the blood, it was a somewhat rare blood disorder until the 70s (I think) 30% of population pre-disposed to it, it can affect any organ in the body, it goes to the brain, it's alzheimer's if it goes to heart it can cause plaque to build up and therefore clog the arteries and lead to heart disease as well as the lungs, so on & so forth, people w/amyloidosis aren't even considered for a transplant due to the inability to 'cure' the disease, the new organ will become diseased in a matter of time. Most of this I have read on other sites, some I have obtained by his doctor. He is 67 yrs old & the drs are all telling him not to be too concerned though that he is more likely to die of old age than he is of any of these 3 ailments. His quality of life is good, he's in no pain at all. I hope this helps some, never give up hope though.