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Friday, February 7, 2014

Ehlers Danlos Our New Best Friend

March marks almost two years since my daughter first started doing well with her Dysautonomia treatments.  She improved even more since this last October.  During the doctor's visit that month, her doctor told us that she would improve even more, but new symptoms/issues would arise.  They were always there, but they took backseat to all the other issues from the Dysautonomia.

He was right.  My daughter began having increased trouble with her joints.  We have gone to the doctors many times and even avoided going many times because of sprained joints.  She once again started showing an increase in having problems in her legs and feet.  The reason this just started showing up again?  She was now out of a wheelchair and using them normally again.  The stress was too much though.  After returning to the geneticist, we discovered that she had diagnosed my daughter two years earlier with Ehlers Danlos.

Our new focus is our new best friend.  My daughter has started doing physical theraphy specific for patients with Ehlers Danlos.  It has truly been an eye opening experience to see how weak and deconditioned her muscles are.  Thankfully, there is a physical therapist that knows Ehlers Danlos well and has treated others with it for years now.  He is very understanding and very easy to work with.

Our new best friend has really opened our eyes to other problems that she has been having all along.  It is like having a puzzle, the comparative picture is covered in dirt and you just can't figure out the pieces and create a picture as it should be.  Suddenly, somebody comes and cleans all that dirt off of the comparative picture and it all comes clear to you.  You had the right idea, it was just upside down.

We have to learn to see things differently, we have to learn to live life differently; afterall, best friends are forever.

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