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Ehlers Danlos Syndrome, MCAS, POTS, and MALS
Bones, Joints & Muscles | Last Active: Jun 12 9:01pm | Replies (46)Comment receiving replies
@maj7499, you're right that the EDS Specialty Clinic at Mayo Clinic in Florida exists and is growing. I will look into the info that Rochester is sharing.
You may also wish to follow their blog here written by Dr. Knight and team:
- Ehlers-Danlos Syndrome Blog https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/
I'm thankful that your daughter's appointments have been scheduled. Will you be accompanying her?
Replies to "@maj7499, you're right that the EDS Specialty Clinic at Mayo Clinic in Florida exists and is..."
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Colleen, we were disappointed that Rochester Mayo doesn't have an EDS Specialty Clinic as we live only an hour away. But my daughter has appointments at Jacksonville. I will be accompanying her to Florida but watching her children while she and her husband go to the appointments. It wasT very disappointing that she didn't get accurate info when she called Rochester Mayo, she could have gotten in much earlier to help her struggles. The woman she spoke to also had terrible customer service skills with no "bedside manner" with no patience and was quite short with her. Thank you for looking into that situation, we wouldn't want anyone else to receive inaccurate information.