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Ehlers-Danlos Syndrome

OK. This is not specifically a Crohn's thing but an older sib of my 2 Crohn's kids has just been diagnosed with this. I have heard it bandied about around here. I know there are parents who will tell me much.

Please send anecdotes and info. She is 16, was basically crippled from a tiny meniscus tear, has had back problems requiring physio (although diagnosed as caused probably by poor posture), been seen by GI for constipation issues, had sleep study for chronic exhaustion, and chiro had noticed her hypermobile joints.

Hopefully it's OK to post here due to the Crohn's connection.

my little penguin

Staff member
Make sure they look at the heart with imaging .
The version where the heart is involved can be dangerous
The other types not so bad
Tends to run in families
Symptomatic treatment vs the whole person is what we have seen
Rectal or vaginal prolapse
Water breaking prior to labor starting
Hypermobile joints
Stretchy skin
Stretch marks
Curvature of the spine
So lots can happen
Physical therapy is key
Non ibd kiddo has it per rheumatologist