Did you know that there are over 7,000 documented rare diseases affecting nearly 1 in 10 Americans – 50% of whom are children.
Also, there are over 30,000,000 people in the United States with a Rare Disease.
According to Geonome Medicine -”The average time for accurate diagnosis of a rare disease is about 4–5 years; in some cases, it can take over a decade. These patients face a diagnostic odyssey and often undergo extensive and expensive workups at several institutions.” You can read the full article in the link below.
I am one of the many that have a rare disease. My rare disease is Spina Bifida, it is also known as the snowflake disease because every individual is affected differently by Spina Bifida. In my case I was born with Spina Bifida occulta.
The CDC defines Spina Bifida Occulta as “Spina bifida occulta is the mildest type of spina bifida. It is sometimes called “hidden” spina bifida. With it, there is a small gap in the spine, but no opening or sac on the back. The spinal cord and the nerves usually are normal.”
Because my Spina Bifida was on the inside and “hidden” from the visible eye, the doctors and my parents didn’t know until I was 2 years old that I had it. It was when I started to walk and had a gait issue that they started to learn more about my condition. I wore a back brace from age 2 till I was 16 years old. I also had a shoe lift to assist with my gait issues from the time that I was 5 years old until I had a leg length discrepancy surgery when I was 23 years old. In 2011, a surgery left me paralyzed. I am now a T-10 incomplete paraplegic that uses a wheelchair to move about the world in my day to day life.
I want to say Happy Rare Disease day to all the uniquely and wonderfully made individuals in the World. Today we Celebrate our Uniqueness. Together we are helping to carve out an easier path for individuals in the future, through the knowledge that doctors gain through our existence.
https://rdcu.be/c6EYH copy the link then use the paste and go method to go direct to the Geonome Medicine article.
https://www.cdc.gov/ncbddd/spinabifida/facts.html#:~:text=Spina%20bifida%20occulta%20is%20the,the%20nerves%20usually%20are%20normal.