Hi there- That’s great that you got an appointment at the EDS Clinic. I had my appointment last spring, and I’m not done with my full workup yet because I live out of state and had some trouble coordinating the other appointments the EDS Clinic requested.

I’m happy to help with any questions I might be able to answer about the experience and what to expect. It looks like you got pretty well covered with the insurance question.

As far as I know, insurance does not cover housing or travel. If you have a flexible spending account for healthcare (this would usually be a benefit through your job) it can be reimbursed. Unfortunately, I don’t think there’s free medical housing offered for this type of condition. At least, there are two listed in their website and one is for transplant and the other for cancer.

Thankfully, where I live, there were multiple direct flights via Southwest which were not super expensive (still a cost nonetheless). There are many hotels in Jacksonville and Jacksonville Beach very close to Mayo, but the hotel stay was probably what cost me the most. I would think there are Air B&Bs that might be less expensive since the beach is so close?

It was a very expensive trip for me, but I don’t regret going. I’ve had chronic pain since 2015 and while I learned a lot on my own and with my care team at home, they filled in some gaps I was missing, even if more gaps remain.

Full disclosure, and I’ve alluded to this elsewhere in the forum: I have not had the most positive experience with the EDS Clinic. And they know this; we’ve talked about it. The staff is really kind and dedicated, but administratively and in terms of getting the other appointments in other departments coordinated, it’s been a huge mess—which is why it’s almost a year later, and I’m still not done with all the appointments. I don’t want that to color your view of it; I don’t regret going. And where others have referenced it on Connect, they’ve had all positive things to say.

So I’m honestly not sure if my experience was just a one-off, or if it’s because I live so far away that things for bungled. My hypothesis is it’s a newer clinic and around the time I went they experienced two big changes: The end of the COVID public health emergency threw them into confusion about what could be offered as telehealth (because they had been relying on it for almost everything and suddenly services they promised me could be done remotely no longer could) and they doubled they number if new patients they see per week when they hired a new PA. But all of us have complex cases, and there’s still only one point person to coordinate.

Hopefully it’s better now, but the one piece of advice I wish someone had told me before I went is to: Be your own best advocate. Meaning: Ask questions, keep tabs on your schedule, follow up, be prepared with your medical history because you’re the best voice to represent you and communicate your goals so they can help you.

Wishing you all the best and I’m happy to help if I can!