Rare Disease Day

Today is Rare Disease Day. According to the website:
A disease or disorder is defined as rare in the USA if it affects
fewer than 200,000 Americans at any given time.
My wife Ann has a rare disease called Neuromyelitis Optica.

Do you know anyone with a rare disease?

... thought I would republish this post from a few years ago.


  1. My little granddaughter, Ella, has cystic fibrosis, a genetic disorder. The CFF says 30,000 in the US have it, but those in the community feel there must be more. Great strides are being made toward more effective drugs, and we pray that Ella's future will be bright. She certainly brings brightness to all around her.

  2. My husband, Tom, suffers from a rare disease called Wegener's Granulomatosis. It is an autoimmune disorder that affects the blood vessels and leads to kidney failure and many other problems, some life-threatening. He had his first recognized attack in 2006 and was in ICU for a long time. He had plasma-phoresis, plus strong steroid treatments. Now he will take steroids and immunosuppressants for the rest of his life. However, it is now in remission and he is doing well. For more information about the disease, see http://en.wikipedia.org/wiki/Granulomatosis_with_polyangiitis.

    1. Thanks for sharing Rez Lady! I can so relate to what you have written.My wife has an autoimmune disease and has spent a lot of time in ICU, hospital rooms and physical rehab places, She has had chemo, plasmapheresis, steroids, drug pump surgery and a stem cell transplant. She has been in and out of remission many many times and now gets around in a motorized wheelchair. I pray that researcher will one day find a cure for all of these autoimmune diseases. I'd also like to see them find a way to repair damaged nerves.


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