Monday, March 2, 2015
Yesterday was Rare Disease Day. As someone suffering a rare condition, Klippel-Feil Syndrome, I consider this a day to take the time to appreciate and thank those who suffer 24-7 and bless us with their gifts. For those of you who don't know, Klippel-Feil Syndrome basically means you were born with some of your neck bones fused. It's like you missing vertebrae. Only 1 in 40,000 have even a hint of it, and of coarse, mine is severe. Instead of 7 neck bones - I have three. When I was in school, kids would tease me that I look like a football player because it looks like I have just shoulders and a head - and asymmetrical shoulders so that adds to the fun. Throw in severe scoliosis and I'm a barrel of fun. Through the pain, I think the suffering has taught me to be a better person, ignore the waste in life, be more empathetic, etc.
So ingrained in my personality, I don't know what kind of person I would be without it. To me, it's so important that there are people like me around to help others try to learn empathy and to live without beauty perfection. I won't go into my beliefs about science, DNA, and eugenics, but I've found that instead of scientists and doctors helping people have the best life they can, I'm consistently told "We know the gene so no one will suffer in the future." While this is nice, I worry about being the last of my kind and that people don't believe those of us with rare disorders can make meaningful contributions to the world. We can and do! If nothing else, to those who love us. So with that in mind, I thought I'd share some tips for appreciating those of us with rare diseases:
Saturday, February 28, 2015
Sunday, February 22, 2015
|1932 Ad from a mystery magazine|
Saturday, February 21, 2015
Monday, February 16, 2015