Ehlers Danlos Syndrome - Skewber Alex's story

Skewber Alex shares her very personal story about living with Ehlers Danlos Syndrome, in the hope of raising awareness of the rare genetic disorder and invisible disabilities.

[@LucyBest-zd5yc]

Thank you for sharing your story and all the videos of you collapsing.

[@jaliamovementarts7681]

Thank you for sharing your story. We need to hear how it affects each person differently. ❤

[@EnglishMermaid1980]

I don’t understand how you got this later in life. You mentioned before EDS. I never knew a before EDS. I’ve been diagnosed with hEDS too but I’ve had it since birth.
I’ve been in agony, with my knees especially, since I was a small child with frequent dislocations when I was a small child too, along with lethargy, dizziness, blood pooling, allergies, heartburn, palpitations etc.
I’ve never heard of anyone developing hEDS before. I thought everyone who has it was born with it.
Glad you have answers now 🙏🏻

[@atilla568]

Hi, I was referring to life before diagnosis, I had many issues that had remained unanswered, once I was diagnosed and I understood the condition and the co morbidities everything made sense. I made reference to the stomach issues in this video but there were many issues with my back and both pregnancies, it became life changing and debilitating and I lost my independence when I started collapsing frequently at 41 and only then did I receive a diagnosis and understand all the health issues I had experienced throughout life. The issue is obtaining a diagnosis and effective treatment which is why I try to raise awareness ❤

[@EnglishMermaid1980]

@@atilla568 I see what you mean, I felt the same way when I was diagnosed after my teenage son was diagnosed