Ehlers Danlos Syndrome

[Phoebe]

I wanted to start its own thread. My husband has suspected the possibility of EDS in DD15 for awhile. She has had issues since age 12. You can hear her walking from a mile away because her joints click with every step. Her joints are often stiff but crack profusely when DH uses OMM on her. She had a bone chip on her heel from the ligament rubbing on it regularly.

She does have a ADHD and anxiety diagnosis, but both run in the family.

She complains of stomach and headaches and dizziness nearly daily and won’t eat in the morning because of it. We always tell her it is because she doesn’t eat or drink enough. She has eating issues and only eats about 10 different foods. She is always exhausted. I don’t want to make a host of separate symptoms fit into a package if they aren’t related. I hope this isn’t the case because she has started running cross country and track. She has natural ability to run fast. Yet, swollen ankles keep her from training 100%. In cross country, a month of training landed her in a boot. Physical therapy didn’t really work. Only rest did.


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[Pollyanna]

Check out my post in the call room about this. I think it’s in the response to kicking themselves out of the nest. EDS is NOT the rare disease it’s listed as. Let me know if you have any questions!!

Edited to add: When we say the specialist he did not tell Cordelia she had to stop dancing. He wanted her to back off a bit to heal.

[Phoebe]

I did read it and that is what prompted me to post in a different thread. My husband reached out to a medical geneticist friend and a genetics counselor after I had him read your post. The genetic counselor said Indiana University has a Connective Tissue Clinic and that most cases are clinical over molecular.


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[diggitydot]

Our middle kid has EDS-1. No tight joints. Kid instead has hypermobiliy and does weightlifting 3-6 times a week to tighten up the joints. Dude did her initial screening about a decade ago and she had like 9/10 indicators. One of his mentors has EDS and sees a LOT of EDS patients, so it was a total fluke that he came home and was all, “Look at this cool shit I encountered today. Let me show you on the kids.”

it’s definitely not as rare as they used to think — it’s just frequently misdiagnosed as other things.

[Pollyanna]

I did read it and that is what prompted me to post in a different thread. My husband reached out to a medical geneticist friend and a genetics counselor after I had him read your post. The genetic counselor said Indiana University has a Connective Tissue Clinic and that most cases are clinical over molecular.


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Great!! I hope you can guys can get some answers and your daughter finds relief!

[houseelf]

Pollyanna,

That thread literally changed my life. I'm seeking medical advice from a new facility and practitioner because of what you said. My sincerest thanks.

Kelly

[Pollyanna]

Pollyanna,

That thread literally changed my life. I'm seeking medical advice from a new facility and practitioner because of what you said. My sincerest thanks.

Kelly

I’m so glad. Praying your girl can get some relief. Please keep us posted!!