Tuesday, January 3, 2017

Living With a Rare Disease: Why Blount's Disease Matters

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      Blount's Disease affects under 200, 000 people alone in the United States. With no supporting organization, awareness and sharing our stories is the most powerful tool we have. Many of us on these groups have children who were diagnosed with Blount's Disease. But what about the long term? What will happen to our children when they get older? Will they need knee replacements, end up with osteoarthritis? Will they suffer with leg length discrepancy? The outcome of Blount's is unpredictable. Some may be cured from it, while the condition reoccurs for others after surgeries.

      I had the opportunity to hear from the adult side of those affected by Blount's Disease. One of the most serious problems for those affected with a rare disease is that there is too little or not enough research being done. Finding that connection with others who are going through the same experience can provide reassurance and a sense of community.

"I'm 48 years old and have had Blount's all my life ! Mine has gotten worse now that I'm older and have gained weight, there are not a lot they can do for Blount's. Most doctors are telling me that they know very little about it! I really would like to find people who have it so' we can get together and maybe try to find funding for the studies of Blount's for our children in the future to be able to be treated as they need to be. Blount's has cause me a lot of heartaches in my life and a lot of loss's, I also have drop foot where because, of having Blount's they killed a nerve during surgery in which gave me drop foot! I have a surgery coming up this month and I pray my leg gets better because now its knocking out my hip joint! Because of the shortness of one leg and the pain is so real!" - Jewell

"My name is Dustin. I had blounts as a kid. Im now 29. My blounts affected my tibia growth plates in both legs. My condition was the most extreme my doctor Kieth Gabriel at Cardinal Glennon children's hospital had ever seen. I had just turned 7 when I had my first surgery. 5 years and ten more surgeries later, my doc released me. My left leg ended up shorter than my right so I developed severe scoliosis over the years along with severe arthritis in my lower back. Anatomically your height and arm span should be the Same or close to the same. My arm span is 6'5". My height is 5'6". This means I lost about 11 inches off my height."

"I'm 59 years old and had Blount's disease as a child. I didn't get treatment until I was 13 and by then I had to have surgery (both legs). My younger brother also had it but only in the left leg which also required surgery. My male cousin had it in both legs but the left was the worse. He never had treatment. I had to have 2 surgeries. One at 13 and another at 14 because I didn't have enough growth left for the first surgery to be effective. The articles I've read about Blount's says "there's no pain associated" - WRONG. I had pain all the time as a child but they called it "growing pains." My knees would also go out on me and I would fall. At last at age 55 I had double knee replacements and for the first time in my life, my knees don't hurt.- Tessa

If we continue to raise awareness and share our stories, we never know who we will reach out there in the world, that could hopefully lead to better research and more answers. Lets continue to be a support of encouragement and work together to have hope and raise awareness for Blount's Disease.

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