As a member of the Yahoo support group for familial amyloidosis (www.familialonline.com), I get an email whenever a new member joins the group, containing some or all of what they submitted to the moderators in order to join. On September 13, 2011, I received this email about a new member:
I previously joined the AL Amy support group but have now been diagnosed with hereditary fibrinogen a alpha amyloidosis.
Hey, another person with the fibrinogen mutation. Up until this point the only other person I knew with it was Cathy Tidwell, so this person was definitely someone I'd like to make contact with. So I sent an email to the support group addressed to the new member with fibrinogen amyloidosis, basically to introduce myself and offer to share any information I had already gathered. That person wrote back and I'll share just a bit of that person's information here. She's a female we'll refer to as NL, and she lives in South Africa. She's a little younger than I am, and at this point she has proteinuria. So it sounds like her amyloidosis was diagnosed relatively early. She suspects she inherited it from her father, an Englishman who died of kidney failure.
NL and I swapped a few emails over the next several days, talking about transplants, genetic testing, dialysis, etc. I ended up sending her eight articles on fibrinogen amyloidosis, plus the letter I sent to Mom's cousins informing them about her diagnosis and what they should do about it. That exercise of finding and sending those articles is what really got me thinking about how convenient it would be to have all that stuff in one place. And look, just a little over a year later, it's a reality. Now I can simply direct any new fibrinogen amyloidosis patients to my Resources page.
So it's September of 2011, more than a year after Mom's diagnosis, and I've been in contact with just two other people with fibrinogen amyloidosis. Next up is the bi-annual meeting of familial amyloidosis patients and caregivers in Chicago at the end of October. Will we meet any other fibrinogen patients there?