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Warrior Wisdom

I have CMT and I feel beautiful

I have CMT and I feel beautiful

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...

When life gives you LEMS, make LEMonade!

When life gives you LEMS, make LEMonade!

Hi all! My name is Ashley Gregory. I am a 30 year old who lives in Virginia! My mom passed away from breast cancer when I was 15 after a several year long battle. So I decided to dedicate my life to helping others and graduated nursing school in 2014. After that, I...

Suddenly it Matters

Suddenly it Matters

I've always known I've had hydrocephalus. It's sort of like that big brother's in the room but you never talk about it. It's just there. Never in my life did I imagine that in my teens it would cement itself on center stage & not only demand to be recognized but...

Two sides to a face

Two sides to a face

I was born with Sturge-Weber Syndrome, with a large portwine stain birthmark covering the left side of my head and neck. Lots of extra blood vessels resulted in glaucoma and visible differences in my left eye. At 10 months, like many with SWS, I began to have...

My journey

My journey

My issues started @ 14 mos of age with a subdural hematoma leaving me blind in my right eye and a klutz my whole life. Fast forward to 17/18 and depression and anxiety came into play. Fast forward again to 2011 and I had to have a hemilaminectomy on my l5/s1 disc. My...

Why I’m Me

Why I’m Me

My angel Warrior Eryn was born with very weak muscles. She spent a lot of time in the hospital as an infant and toddler. This prompted me to become a nurse. I work as both a pediatric and neonatal nurse to help parents like me and children like mine. I gained a new...

Have a Little Faith: My Story

Have a Little Faith: My Story

August 1996 was when my journey into this world began... I was born a twin. Our arrival was definitely unpredictable. We were born three months early on the day of my mom's twenty-fifth week of pregnancy. My brother, Christian, was born first, and seventeen minutes...

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