Posted at 11:30 PM
If I had a nickle
by Nancy L.

If I had a nickle for every time I heard these words.
Your fingers are so long. Do you play piano?
I would be able to afford to go to one of those special conferences specifically about Marfan syndrome. Why you ask? I am 48 yrs old, and have never in my life, shaken the hand of another marf. Can you imagine a disorder, disease, or whatever that makes you so rare, you might never look at someones eyes that are just like yours.

If I had a nickle for every time I heard these words.
May I bring in my collegue, because he/she has never seen a marfan in person?
Since being diagnosed at the age of 3, a doctors visit is rarely just one doctor. We are so special and rare, that any specialist that has a chance to get a look at you, or to touch you with the stetha scope while he listens to the "marfan click", will do just that.

If I had a nickle for every time I heard these words.
Why are you so tall, your mom and dad are only 5'8"?
I would donate every single penny of it towards research.
Although medicine has changed dramatically, there are still plenty of us suffering and unable to lead normal lives. That is the unfair part of being a marfan.

Thanks, Nancy!