Stories

Her Rare Disease Story

March 6, 2025

A woman in AFOs, knee brace, wrist braces and kinessio tape.Her disease is so extraordinarily rare, she’s a true medical mystery;
yet there is nothing different or unusual about her,
until the day the test results changed her life.

Her body is covered with scars from the assaults of her disease,
yet she effortlessly wears them so well.
She’s far from high maintenance, she’s casual, comfortable and cute.

The damage to her body threatens to destroy her,
yet she refuses to let it stop her.
She crosses that fine invisible thin daily and when she turns to see how far she’s come,
she proudly smiles with that defiant look and says
“See I’m not as fragile and weak as you expect me to be”.

Every night she falls asleep in silent tears from endless pain and fear as her body literally tears apart;
yet she wakes every morning with a smile on her face, it’s a new day full of possibilities, hope and joy.

She’s forced to fight this battle for the rest of her life; yet she rarely asks for help.
She can at times be quite stubborn; yet she incredibly self reliant and strong beyond belief.

Her life is happy and full, inspire of her disease or perhaps because of it.
It takes an enormous toll; yet it never shows because you will never really know what goes on behind her always smiling face.

By Brenda Fregger

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