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The Spoonie Struggle


Jul 7, 2021

Episode 25: Alex Haut's Story with Ehlers Danlos Syndrome

In this episode, Alex Haut discusses her experience with growing up with Ehlers Danlos Syndrome, arthritis,  and ulnar nerve entrapment. She also has GI and liver issues. She was diagnosed by her pediatrician when she was in elementary school. She was shocked to be told she had the condition and didn’t quite understand what a chronic condition was at that age. She is currently living in Thailand. She copes by using a red light therapy device, ignoring pain, exercise, knee strengthening, staying busy, and resting.

Her right knee dislocates every time she bends her leg. She later had a failed knee surgery. She was diagnosed with an enlarged aorta at age 17. Challenges include not having a health community, never knowing what is the cause of which symptoms, and doctors not listening to her or believing her. She created an EDS abroad Instagram page to gain community during COVID. To advocate for herself, she reminds others  that she has this condition. Her biggest issues now are her knee, brain fog, pain, and chronic fatigue.

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Hosted by: Jessica Temple 

Music by Antarcticbreeze Music

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Copyright 2021 Jessica Temple