I do not have a rare disease. I am lucky that what hit me last year is one of the most common diseases. It may suck, but people know what it is, doctors can easily identify it and there are numerous treatments available. People with rare diseases are not so lucky. Often just getting a diagnosis is a struggle, never mind finding a treatment. That’s why awareness is so important. And that’s one of the main goals of our Genzyme Boston Marathon Team – to raise awareness of rare diseases, as well as funds to support NORD, the National Organization for Rare Disorders.
Thanks for a great blog and a great message.
I too was once told that I had little hope of living due to a terminal illness. I was told that I had three months to live.
Of course I have to add that I was told that almost ten years ago. While my doctors are still CERTAIN that it will get me in the end, they have given up on predicting when.
Now I know I will keel over one day. In accepting that I have merely agreed to see what all of us must one day, that life has no guarantee and if you just do what brings you joy, you will find the strength every day to continue.
Thanks to Amy for doing this work. I hope all of you see your way to supporting this incredible and important cause.