"I have this!"
That was the first sentence of an email I received less than two hours after sending my August 2 note to the support group about Mom's diagnosis of fibrinogen amyloidosis. It was from a woman on the West Coast who also had fibrinogen amyloidosis and had undergone a liver transplant just three weeks ago. She said Mom was the only other person she knew with fibrinogen amyloidosis. So although Mom has a rare mutation of a rare form of a rare disease, we were already in contact with someone diagnosed with the same thing.
Another interesting thing about that email is that it wasn't the first time we had communicated. You may recall my previous post with the title April 23, 2010 - Foreshadowing (published October 15, 2012), where I had a short email conversation with "CT," whose initial symptoms were similar to Mom's. Well, "CT" was Cathy Tidwell, the woman from the West Coast who has fibrinogen amyloidosis. She had written me in April after I sent a note to the group about our lack of success at getting Mom diagnosed locally, and as it turns out, she did have the same thing as Mom. Cathy also has a blog documenting her journey, and fortunately she didn't wait two years to start it. Here is the link to the first post on her blog: http://cathyandlon.blogspot.com/2009/09/just-beginning_22.html
Cathy and I swapped a few emails over next day or two as I continued educating myself about fibrinogen amyloidosis. While we waited for Mom's next appointment with her nephrologist, my mission was to learn about fibrinogen amyloidosis so I could start informing the family.