Ehlers Danlos

[Ami0192837465]

Hi, My younger sister who is 14 is having debilitating back pain and mild hand and shoulder pain. She is also rather flexible and has stretchy skin is some but not all of her body. I was wondering if she might have Ehlers Danlos Syndrome or some other conective tissue disorder? Should she get tested?

[IvyOlson]

Hi, don’t know if you’re still interested..
Look up websites that have lists of symptoms and criteria.  

Go over it with your sister and make a list of what you think fits.
Then make an appointment with your primary care and share it all and ask for a referral to a geneticist.

[Dr Santos]

Hi,
How is your sister? As mentioned from the other post, it is best that you have her checked for proper diagnosis. Clinical diagnostic criteria for all forms of Ehlers-Danlos syndrome (EDS) were proposed by Beighton et al and this needs to be evaluated. Molecular genetic testing may also help rule this out especially if there is no history in the family. Take care and best regards.