Hi- I realize this is an older post, but figured I’d try reaching out just in case, because I’ve definitely been in your daughter’s shoes and it can be an agonizing wait. I’m around your daughter’s age and was diagnosed with HSD last year after long suspecting it, and I have POTS.

Were you ever able to get in contact with the EDS Clinic at Jacksonville?

I’m a little surprised by what happened to you (so frustrating!!!), but given my recent experiences with the EDS Clinic, unfortunately I’m not exactly shocked. I started a workup with the EDS Clinic, and while it started smoothly, things started to fall apart administratively after I got there. It’s a very small clinic and team and I suspect they’re short-staffed and/or overwhelmed with appointment requests.

But as Colleen had mentioned, I called (this was in May 2022) the number on the website and inquired about an appointment. The person I spoke to asked me a handful of screening questions. I’ve been struggling with this for a long time and I’m familiar with my medical history, so I knew all the answers. I was surprised to find that was enough for her to put me on the wait list. Maybe things have changed as the pool of people needing help grew. She said in some situations, she has to have a member of the clinical team speak with the person; maybe that’s what happened to you? Still, that’s horrible that no one called at the appointed time. But I’ve called and had to message repeatedly to follow up on administrative and scheduling questions before; the longest it took me to get a response was 6 weeks.

I do know at times since then they’ve had to close the waiting list. If you’re up to it, you and your daughter could keep calling periodically. The one good thing about the number being public is you could call directly and talk to a human.

To be honest, I’ve gotten the most help from skilled PTs, OTs, and online resources and bloggers. (Happy to send some along if it would help—the info helped me know what things to ask for from my PCP and PTs). Although EDS/HSD is so marginalized in the medical community, there is a robust online community. I know it’s not the same as personalized care, but depending on the symptoms and if it’s hypermobility-type EDS, I’ve been able to get father than I thought I could for chronic pain and fatigue with PT, OT, Google and a supportive and invested PCP. GI symptoms, screening for heart conditions associated with EDS, and fatigue have been more difficult to address, but good PTs with experience with Hypermobility and Central Sensitization and POTS took me farther than any doctor probably could have. It’s crucial to understand Central Sensitization because many people with EDS/HSD also have it.

What kind of symptoms does your daughter have?