More than one family member with AL amyloidosis?

An interesting twist to my AL amyloidosis story is that BOTH my Dad and I have lambda light chain AL amyloidosis. Just to be clear - this is NOT familial amyloidosis. But we both have it. The team in Boston was astounded, and they've never heard of a parent-child combination with AL amyloidosis! My Dad and I both had our stem cell transplants in Boston, 9 months apart (my poor mother and sister).

We've asked the team in Boston if there's any genetic testing to be done on us that would be helpful in determining the cause of AL amyloidosis, thereby hopefully developing better diagnosis and treatment. However, right now, it just being the two of us and genome mapping being very expensive, it's not working out.

So I'm doing a little research to try to find other parent-child combinations with AL amyloidosis out there. I'm hoping that if we get more than one pair, it will become worthwhile for BU or Mayo to get a grant to do genetic testing on us to try to get a better understanding of what causes AL amyloidosis. So, have any of you heard of other pairs of immediate family members (siblings, or parent-child) with AL amyloidosis?

I haven't yet heard of another family with your situation, TJ, but as the support group grows, perhaps we will hear of another. I'm assuming your dad wasn't exposed to Agent Orange? It does make me wonder whether there are other, as-yet unidentified environmental agents that could increase the chances of developing AL amyloidosis, and whether perhaps your family might have been exposed to such an agent.

I hope your dad is also doing well!

Wait a bit... this should interest you:

And this:

TJ, while my Mom passed away from AL 20 years ago and had 7 children, so far, none of us have had any symptoms.

Where is your AL located in your body. Is it in the same place as your Dads?

What has BU told you? Do they know of any 2 family members that have AL before?

Stay Strong, TJ! My prayer is that they will find a cure soon!

PS My family donated my Mom's organs 20 years ago to use for research and I hope it helped in some way!

Dancermom, there's been no exposure to Agent Orange at all. My Dad got very good partial response from his SCT, and is just finishing up 6 months of velcade/dex right now. His light chains have decreased nicely, and they are high normal range now. Those articles are very interesting! Some day I hope our family case will be helpful.

My amyloidosis was diagnosed so very very early. Since my Dad was only 6 months out from his SCT when my symptoms started, I was very attuned to the symptoms. I had symptoms about 3 months before I was diagnosed, and markedly noticeable symptoms for about 3 weeks before I was diagnosed. So I only have it (noticeably) in my kidneys and autonomic system (I used to get lightheaded with standing up). Dad's amyloidosis is also predominantly in his kidneys, though his heart labs are slightly elevated and he also has autonomic involvement. Early diagnosis is key - since I was so young and still healthy at diagnosis, I was (and continue to be) a good candidate for whatever poisonous treatments they can dream up!

BU has never treated a case of parent-child AL, though I'm sure they've read it in the literature.

Here's hoping for peace and health!

I know of a father/son duo that both have the disease. I also know of a patient that grew up in upstate New York and both he and his childhood friend have the disease. There are a few geographical areas of the country that have been identified to hold pockets of AL patients so it also appears that there could be some type of environmental connection going on with the disease. They just don't know what it is as of yet. There are also many patients that had a parent diagnosed with MM and then years later the child develops AL. We can only hope that continued research will solve these mysteries and come up with a link to all of this. Then perhaps they can find a true cure!

Thank goodness we have you ga_peach...You have so much knowledge that is so supportive! are not alone! Louisa

good discussion