Rare disease day

Today is a day that I have known about since I was 13 and diagnosed with a rare disease called Friedreich's Ataxia. It was a day that I knew existed but I tried my very hardest to block out of my mind and not think about. I thought that if I did that, if I didn't think about FA it wouldn't be real. But I had to accept my reality. I had a choice. How would I react to my life?

One of my main goals this year was to be more of an advocate for FA. To accept the battle God called me to fight. As we are approaching the third month of the year, I have quickly realized that the goal that I set for the year was also a daily goal. I have a choice whether I want to get out of bed each morning. I have a choice to be happy each day. It’s all about how we react.

I want to feel confident when informing people about FA and to raise awareness. I don’t want to feel embarrassed or shy when asked about my illness. 6 years after being diagnosed I am always learning and adapting to reality. 

Here are some insane statistics about FA. 

1 in 100 people carry the FA gene. If 2 people with the gene have children, they will have a 1/4 chance of having FA. 5,000 people in the US have Fredreich’s ataxia, and I am one of them. There are only 15,000 people in the world who have FA. 

I was one of the “lucky ones!”

Rare disease day may just be another day for some people but for other it’s such an important day because it allows the light to be shown on the rare ones. 

I have chosen to react to FA by staying positive and talking about it, no matter how hard or challenging it is because I have a voice and I want people to know it’s beautiful to be rare. 

 -M