If You Or Someone You know Has Blount's Disease, I Really Want To Hear From You! Please Email Me!

Now, there is a place to go... Now, we are no longer alone...

BenHasBlounts@gmail.com

Thursday, January 6, 2011

Benjamin Has Blounts Disease...

My name is Kira; and my son Ben has been diagnosed with Infantile Blounts Disease.

Blounts Disease is a rare growth disorder also known as 'Tibia Vera'. Only 200,000 people in the United States have been diagnosed. There are two types of Blounts, Infantile and Adolescent. Treatments can range from bracing all the way up to surgery.

I really wanted to start this blog because there is not a lot of information out there. When my son was diagnosed a few months ago, one of the first things I did was look up 'Blounts Disease' on the internet. Unfortunately there was barely any information; and what information I did come across, was scary as Hell!

Because Blounts is so rare; there are no support groups; no forums (that I can find), there is no one that I can email; or get in contact with that has their own experience to share. I am going to start documenting Ben's journey; in hopes that someone out there will do as I did; and research Blounts on the internet. Maybe we can find eachother and finally have someone to talk to about this very confusing, very complex disease.

7 comments:

  1. Just checked my blog and noticed you had checked it out! I have been so far behind on updating my blog and am so glad you have taken the time to also chronicle and give info to other families re: Blount's. Please let me know if there is any help we can give. Good luck to you and Ben...you will get through this!!! :)

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  2. My son also has Blount's and I thank you for starting a blog to capture your journey with Ben. Best of Luck!

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  3. Hello, My name is April. I have an 8 year old daughter named Payton. We just found out she has Blount's. I would love to talk with you!

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  4. Hi my name is Tina and my daughter destiny was diagnosed with blounts when she was 4 yrs old she is now 18 yrs old . Destiny started off with therapy and leg braces and has had surgerys ,
    were they put surgical staples in her left knee to stablize the bone while she grew. She did fine for awhile now she needs more surgery but we stay in good sprits. I am having a benefit for Destiny because she is now in a wheel chair and we need to make our home more wheelchair accessible. Destiny also has diabetes and that also has and effect on her progress . I thankyou for sharing your sons progress with me it helps to talk about it. I wish you lots of luck and now that doctors know more your son has a better shot and getting better.
    .

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  6. Hi Kira! My name is Katie and my son Ryan was diagnosed with Infantile Blount's Disease this past Monday, June 1st. We went yesterday for the molding to be done for braces and they should be here in a couple weeks. Found you by googling KAFO braces.
    How is Ben now?

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