Saturday, February 22, 2014


I've finally learned how to spell fibrillary glomerulonephritis without referring to my medical paperwork. Now I need to learn how to pronounce it, because that is my diagnosis.

1. Every online entry I've found about the disease includes this line: "Fibrillary glomerulonephritis is a rare disease with poor renal prognosis."

2. How rare? It only shows up on .05 - 1.0 percent of kidney biopsies.

3. There is no known treatment.

UM and Mayo have recommended trying treatment with Rituximab, a lymphoma drug. UM has requested pre-authorization from my insurance company and we're now in wait-and-see mode.

While I'm relieved that this is not amyloidosis, I'm also struggling with the reality of having a rare disease that I can't pronounce and no one understands. My health situation is exacerbating a deeper issue: feeling different. Remember the Sesame Street "one of these things is not like the other" skit? Yep. That's me. I'm the W on a chalkboard full of 2s. I've always felt out of place -- at jobs, on teams and even in my own family. And now I feel like I don't even fit in within the world of kidney disease patients. So far I've found one person to talk to -- a very nice 64-year-old woman in Florida with fibrillary glomerulonephritis who has been kind enough to answer my questions over email. For that, I am grateful. She has helped me realize that others have faced this disease and that I can, too.

I found another W.