Thursday, March 1, 2012

Rare Disease Day

So, February 29th, 2012 marked Rare Disease Day. A rare disease is considered to be one that affects less than 1 in 20,000 people. Factor 5 Hemophilia, the wonderful rare disease I have, has only 150 cases reported worldwide thus making it in my opinion very very very rare.
Being "rare" or having something rare about you had a magical appeal to me when I was a kid. I thought it was cool or special to have something that nobody else has. However after years of blood transfusions, pain, anger and confusion Hemophilia Factor 5 is no longer magical to me but a torture and a source of great pain for me.
With that being said I have a wonderful fiance Zane. I don't know if I mention that enough in my blog but he amazing and he decided that we should celebrate rare disease day so instead of being sad about having this condition I got to celerate by going out to our favorite restaurant together and doing a little bit of shopping at the mall.
Anyone who suffers from a rare disease or any disease for that matter has without a doubt a ton of obstacles in front of them and reasons to be upset with their lot in life but today I am happy to say I can see the positive and I feel very blessed.

1 comment:

  1. Hi My name is Jenna and I came across your site. You are an amazing, wonderful, courageous and determined, person, fighter, and woman. You are an inspiration and a hero.
    I was born with a rare life threatening disease, developmental delays, 14 medical conditions.