
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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