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Ehlers Danlos Syndrome - Who is the best doctor to see?

Bones, Joints & Muscles | Last Active: Jun 14, 2023 | Replies (44)
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@tajahar

My daughter is suffering from SMA syndrome and gastroparesis caused by hypermobile Ehlers-Danlos Syndrome. Can anyone recommend a doctor who can help us? Her gastroenterologist will only consider a nasal feeding tube, which her body did not tolerate, and will not consider any other treatment for her. We are desperate.

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Replies to "My daughter is suffering from SMA syndrome and gastroparesis caused by hypermobile Ehlers-Danlos Syndrome. Can anyone..."
Colleen Young, Connect Director | @colleenyoung | Feb 20, 2022

Hi @tajahar, I can hear your concern for your daughter. This must be so hard to watch. I moved your message to this existing EDS discussion:
- Ehlers Danlos Syndrome - Who is the best doctor to see? https://connect.mayoclinic.org/discussion/ehlers-danlos-syndrome-new-diagnosis-1/

I did this so that you can easily connect with other patients and parents with EDS, like @moms34eds @4grace @lovemyfamily2003 @jthigpen @healthhopefreedom @needrelief @csalter @dianeehlinger.

EDS is a complex condition that often requires a team of specialists in different departments including gastroenterology. The Mayo EDS team recently posted these two blogs:
- Gastrointestinal Concerns for EDS Patients https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/gastrointestinal-concerns-for-eds-patients/
- GI and EDS/HSD Part II https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/gi-and-edshsd-part-ii/

Tajahar, have you considered getting a second opinion at the EDS specialty clinic at Mayo Clinic? Mayo also has specialists who treat superior mesenteric artery (SMA)syndrome.

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