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Hello all, my father past away in 2004 from Amyloidosis and I wanted to know what I should do to either test to see if I or my sister inherit this? Any suggestions? Thank you.
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Familial Amyloidosis
- By bellographix
- Posted November 7, 2009 at 12:53 am · 4 replies
- In Familial (hereditary) and TTR amyloidosis
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- By GaPeach
- Posted November 7, 2009 at 12:12 pm
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Hello,
I'm sorry to hear about your father. Had he been diagnosed with Familial Amyloidosis? If not, you should have nothing to worry about as the other forms of the disease can not be inherited. If so, then I suggest that you contact either Boston University Medical Center at 617-638-4317 Or one of the Mayo Clinic's. Boston has the diflunisal trial currently ongoing for familial patients. Since the disease does not usually manifest itself until the 40's and upward, your current age will dictate how quickly you need to act. However, you can be tested for the gene at any age. There is a 50/50 chance of the children having the disease. We do have another online group that is specifically dedicated to Familial patients and families but you will need to contact Muriel Finkel in order to join that list. You can reach her at mangelamy@yahoo.com. Please do drop her an email....she is the President and Founder of the Amyloidosis Support Groups, www.amyloidosissupport.com and can supply you with a lot of information. Also be sure to check our website to see if there are any support group meetings held in your area. I hope this helps you a bit, take care.
Paula Schmitt
Localized Amyloidosis
Atlanta/Jacksonville Meetings Facilitator
- By bellographix
- Posted November 7, 2009 at 2:50 pm
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Hello, he was not diagnosed with familial amyloidosis, but I was just concerned and get advice on how to be tested. Since I have Kaiser insurance, I'm not sure who to ask about it.
thank you.
- By GaPeach
- Posted November 8, 2009 at 1:53 pm
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Where was your father diagnosed and treated? How did they determine what type of Amyloidosis he had. Was his bone marrow biopsy positive? If he truly had primary amyloid (AL) you and your sister should have nothing to worry about. Testing for the familial gene can be done with a blood test. If you still want to be sure, call Boston and see about having some blood sent to them. Ask them what the cost would be for the test if you wanted to pay cash.....I'm not sure, but they may even do it for free. They have tested all of my biopsies and I never have received a bill for the service. Just call Boston and ask. They are easier to deal with than Kaiser!
Paula
- By teixma
- Posted November 12, 2009 at 10:28 pm
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Hi, I was diagnosed with Familial Amyloidosis or ATTR, back in 1995. I was born in Portugal. My mother died from it when she was only 38 years old, and that was 30 years ago, when the disease was not known. For many years after her death we always though that her heart just gave out, but after many of her siblings started to have the same symptoms, we knew that something wasn't right. All of my aunts and uncles that inherited the disease have died, just because they didn't get a liver transplant.
I got my transplant in 2001, at Lahey Clinic in Burlington, Mass, after waiting for only 3 years ( I first went to Boston University Medical Center, whom referred me to the excellent transplation team in Lahey).
I'm doing very well. I recommend everyone that has been confirmed to get on the waiting list ASAP.
Good luck.
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