Patient Comments: Ehlers-Danlos Syndrome - Diagnosis

Question:How was your Ehlers-Danlos syndrome diagnosed?

Comment from: (Patient) Published: November 01

I was having horrible pain and going to rheumatologist who was doing nothing but tests and giving me different drugs to try every two weeks. After going to the ER with severe pain and not being treated I decided to see a pain specialist. Once seeing him within 5 minutes he thought I had EDS and referred me to a specialist in the area. Within 15 minutes of meeting the specialist and talking with him I was diagnosed with EDS!

Comment from: menollyvamp, 13-18 Female (Caregiver) Published: July 18

Both my daughter and son have been diagnosed with EDS. We didn't even know there was anything wrong until my daughter was getting ready for surgery and the doctor wanted her to go to the Hematologist about her being anemic. They ran a lot of blood test but after talking to us the first time the doctor was sure she had EDS. the test confirmed it and then we tested my son and the test came back positive as well.

Comment from: Freebird, 55-64 Female (Patient) Published: May 07

I have had hypermobility (Ehlers-Danlos syndrome) in all my joints my entire life. I continually dislocated my knees my entire life. At the age of 18 I had the Hauser procedure done on one of my knees. This surgery did help to prevent this knee from dislocating, but was a hard surgery to recover from and I basically had to learn to walk again. I have always had to be extremely careful on stairs, many times I have fallen because of my joints dislocating. I have swollen and lumpy joints and terrible bunions, protruding and pronounced bones in my elbows, wrists, and knees. My hips subluxate, and I have learned how to unstick them on my own - on the floor with tennis balls. My pain is very bad and some days I am crying, when I walk the pain is so difficult to bear. I am trying to get a doctor to diagnose me and so far have had little luck. I have been without health insurance for 5 years, just got it recently. The doctors do not seem to know what to do! I have been struggling for years now and just in the last 3 have really gone downhill.

Comment from: Mckey, 13-18 Female (Patient) Published: July 23

I was diagnosed with EDS at the age of 16 after two injures on the same knee , the doctor told me "I think that you have EDS but I have to do some exams to confirm" and the result confirmed that I had EDS...

Comment from: pinky, 35-44 Female (Patient) Published: July 18

I was diagnosed by my hand surgeon about 13 yrs ago, have bilateral wrist fusions-due to injury. I also have bilateral hip displaysia with torn laberals, I can bearly walk -hip surgeons ignore me because they don't know what to do. my hand surgeon says the only way to fix me is joint replacements & or full fusions- my ligaments are the loosest he ever seen. he is one of the leading hand surgeons in the world. phisical therpy makes me worse it tends to loosen up the muscles whick are ther only things holding my joints together. I'm 35 now what happens when I turn 50? know any hip surgeons that wold help me?

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.

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.

Patient Comments

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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 - Treatments Question: What treatments or lifestyle changes have you experienced that has helped symptoms of Ehlers-Danlos syndrome?

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