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. 

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