Patient Comments: Ehlers-Danlos Syndrome - Diagnosis

How was your Ehlers-Danlos syndrome diagnosed?

Comment from: Jake, 65-74 Female (Patient) Published: September 18

I'm 66 years old and was diagnosed with Ehlers-Danlos syndrome at the age of 55. I kept dislocating a standard knee prosthesis and needed to have it replaced with a hinged knee prosthesis. All my joints have been unstable since I was a pre-teen. I was called double jointed.

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Comment from: hemigrl, 35-44 Female (Patient) Published: August 23

When I was eight years old I found myself in pain as I was laying on the ground. I had no idea why, what, or how this pain happened. All I know is the pain was so intense that all I could do was lay there starring at the sky praying that God will help me. I remember the sky was so beautiful that blue it was perfect! But, I wasn't! So, I laid on the ground until the pain was not so intense. I remember making my way inside the house and resting for hours until I fell asleep. I didn't say a word to my parents only "I think I played too hard". Little did I know, this was the beginning of numerous knee dislocations. I am now, 40 years old, and I was not diagnosed with Ehlers-Danlos syndrome until I was 33. More physicians and the general public need to be more educated on this debilitating syndrome.

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Ehlers-Danlos Syndrome - Treatments Question: How was your Ehlers-Danlos syndrome treated?
Ehlers-Danlos Syndrome - Share Your Experience Question: Do you or a relative have Ehlers-Danlos syndrome (hypermobility)? Please share your experience.
Ehlers-Danlos Syndrome - Symptoms Question: What symptoms have you or someone you know experienced with Ehlers-Danlos syndrome?
Ehlers-Danlos Syndrome - Experience Question: What lifestyle changes have you experienced that has helped symptoms of Ehlers-Danlos syndrome?

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