I have CMT and I feel beautiful

Beth_Goldstein_CMT warrior

MyCMTLife's Story

Alaska

Age: 46 or better

A little bit about my journey:

My Diagnosis

Charcot Marie Tooth Disease

Time to Get Diagnosed

About 2 years 36 years ago

Year I was Diagnosed

1984

Sending Love to

Dr. Michael Shye

Hospital I'd Recommend

None

This is my story:

I was diagnosed with CMT and scoliosis when I was 16, I’m now 52. When I was first diagnosed my doctors told me that I would be in a wheelchair by the time I was 21. I decided right then and there that was not going to be the case. Spoiler alert: I am still wheelchair-free although I do wear leg braces. In 2002 I went to a CMT research hospital. After conducting all of the tests, including genetic testing to tell me I had CMT1A, the doctors said to me – “we honestly have no idea how you are still walking, you shouldn’t be able to walk.” But here I am.

As a professional woman I have always dressed to project an image. of style and confidence. Maintaining a wardrobe that can accommodate leg braces has been challenging. I recently started reaching out and helping other women both incorporate their braces and camouflage them to build the outfits that can give them confidence and make them feel beautiful too. Just because I have CMT doesn’t mean I don’t want to look beautiful and feel beautiful. I am working on expanding my presence to reach even more women. Feel free to check out my FB page @MyCMTLife and my Instagram at My_CMT_Life. I’d love to see you.

Let’s play 20 questions:

The song that keeps me going is:
Tom Petty I Won’t Back Down
I never leave home without my:
Phone
My go-to feel better movie is: 
The Big Chill, love the soundtrack
If I was in the hospital, the celebrity I would most love to visit me would be:
Elizabeth Warren
When I need to relax, I:
Binge watch British shows
My favorite food is:
NY Style cheese pizza
The quote that keeps me going is:
Be the change you seek.
When I need a laugh, I:
Turn to my husband
Meet my pets (or favorite stuffed animal):
Molly our mini Black and Tan dachshund
My hero is:
Ruth Bader Ginsburg
When I’m having a down day I binge watch:
British crime shows
My favorite book to get lost in is:
The latest Karen Slaughter novel
I want to be best friends with:
Michelle Obama
The thing I’m most proud of:
My resilience
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
Being able to help other women with CMT
The most hilarious thing that has happened to me is:
Getting my skirt caught in my pantyhose and walking back into the office ugh
It really means a lot when someone does this:
Tells me I have inspired them
My favorite social media account to follow is:
I don’t have one currently
The advice I would give to myself back at the beginning of this journey would be:
You are beautiful now and only get better
Words of encouragement that I’d give to my fellow warriors are
You decide who you want to be.
Follow my journey: FB @MyCMTLife and www.mycmtlife.com

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