Wednesday, January 25, 2017

A Disease May be Rare, but the Awareness Shouldn't Be

There are over 7000 rare diseases in the world with more being discovered everyday. The need for more research, the lack of awareness, the financial challenges, and insurance problems are all factors for individuals and families who suffer from having a rare disease. 

I have come to realize that nothing will be proactive if we don't make a change. We need to become our own advocates and doctors on our condition. We need to help educate the community, friends, and our family members as much as we can.  
Being that Blounts Disease is a rare disease with no supporting foundation, it is up to us parents to step up and fight for our children so that our voices are heard and the feelings of isolation fade away. 

A lot of people don't realize the effects Blount's Disease may have on a child. There is no prognosis on the possibility of Blounts coming back after surgery. Sadly, This condition is basically a " see how it goes trial." There isn't enough research to support proper treatment and each case is handled differently according to each doctors plan. So much medical trauma can cause a child to undergo anxiety and depression, and bullying in school for the way they walk has also been a factor from having this condition. Some are able to be treated with bracing while some have to undergo several operations within their childhood. Who's to say how this condition will impact their adult life because their isn't enough research to support it. 

Having a rare disease makes the individual and the family much stronger as a person and makes them appreciate more in life. People may say "I don't know how you do it," but did we really have choice? No, we just know we will never give up. A disease may be rare, but the awareness shouldn't be. 

Friday, January 6, 2017

Montrae Holland: Living Life to the Fullest Despite Your Condition

Blount’s Disease opened all my doors to actually living. It gave me a different perspective in life. I felt if I can overcome this disease then nothing can stand in my way. I became goal driven.”

The above quote above was spoken in a recent interview by former Dallas Cowboy’s player Montrae Holland. Holland loved playing football since he was a kid and at the age of seven he started experiencing pain in his right leg that years later led to his parents having to take him to the hospital. There at Scottish Rite Hospital in Dallas, Texas is where Dr. Richardson diagnosed him with Blount’s Disease at the age of 12 on his right leg. 

Blount’s Disease is a rare bone disease that affects either one or both legs that causes the lower leg to angle inward. Holland didn’t have treatment with bracing; he had surgery where they performed a successful osteotomy on his right leg. There was a time during the recovery process where he didn’t like going to school and would question “why me?”  As an adult now, he still has a plate and nine screws in his leg, but that didn’t stop him from accomplishing his goals. He made himself a promise that once he was healed he would live life to the fullest. As he healed and got better football was introduced back into his life and was able to play offensive guard. No injury had a chance because he defeated Blount’s. Even though down the road he didn’t get to play football again due to his bicep, in his mind, his torn bicep was nothing compared to what he had been through with having Blount’s.

To this day, Holland still visits the hospital taking gifts to children and remains in contact with Admin of the Ben Has Blount's Network, Kira Hudson. Her son was diagnosed with Blount's Disease and she created her group six years ago in hopes to reach other families going through the same journey. Kira has advocated for many families and has had braces and other services donated to them. She continues to help raise awareness and has been a great support and inspiration to the Blount's Disease community.
The changes Holland wishes to see is actually within the patients to adopt a why not me attitude that will help them defeat Blount’s Disease and any other thing that shows its ugly face on their journey. “It’s a long road, but we have to keep the children looking forward and energetic. Giving them hope and something to look forward to. Focus on the vision. Keep their mind focused on this disease not being their end game. There IS life after Blount’s Disease.”
-Angela Urbano

For those affected by Blount's Disease feel free to join:

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.