Tag Archive: diagnosis

I finally got some answers once I was looked at as a whole person

When I was little, my favorite book was Heidi by Johanna Spyri. I have read the book so many times that I think I’ve got it memorized. The character I always identified most with wasn’t Heidi, even though my mom always compared me to her because of my fiery personality. The character I personally identified
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I knew something was wrong despite my tests coming back normal

My name is Charlotte I am 23 years old and I have hypermobile Ehlers-Danlos syndrome (hEDS) and Marfans syndrome. For as long as I can remember I have ached. Especially in my back and legs. I always presumed it was because I was quite tall (5 foot 8), but I noticed that I can’t stand
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Photo of myself - 29 year old woman with glasses, septum ring, blue eyes and chin length blonde hair

Accepting my illness. Accepting myself.

CW // Contains discussion of mental health concerns and suicide. Whether mental or physical, I have always had the ability to write about my pain. Face to face, vocally, and out loud, I am not as articulate. It is easy for me to downplay things because I am socially awkward. Talking to people seems like
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Claudia sits in a hospital bed with wires attached to her chest

As I clung to life in the hospital, I was diagnosed with vEDS

This story was shared in Spanish, the English version has been translated and in the event of any discrepancies, the original version below with prevail.  I have always been the most vulnerable in my family, half of my life has been in hospitals and medical appointments, everything hurt and I was sick all the time. 
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ceciley doing ballet

Our daughter is learning to speak up and advocate for herself

Cecily is a vibrant and social, but tender-hearted 12-year-old ballet dancer who, despite her multiple diagnoses, not only finds true joy in the day to day but inspires it in all of us.  After years of daily headaches (from the time she could express herself in words), “growing pains”, progressive bilateral leg deformities, and finally
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My kEDS-FKBP14 diagnosis changed my life

After 24 years of searching, countless genetic tests and doctor appointments, I was given my diagnosis of  kyphoscoliotic Ehlers-Danlos syndrome-FKBP14 variant (kEDS-FKBP14). That day, I not only got a name for the condition that plays such an immense role in my life, but I got a tool: I got a name, a word, to help
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