Hi @emo, you certainly have been on a journey of circular conversations, broken communication, and no doubt frustrations. Thanks for taking the time to outline the full story and timeline here. You and I have communicated in various discussions since you first joined a year ago, and I have tried to lend a hand to help things along.

As a trauma survivor, I want to acknowledge that you deserve trauma informed care. I regret that you find yourself suffering from betrayal trama because you feel unheard and that things are spinning in place. How might this change?

I don't think I'm telling you anything new in the remainder of my reply, but I also want to provide information to help others who are seeking care or are in care at the EDS Clinic at Mayo Clinic.

The EDS Clinic at Mayo is a "consultative clinic." This means success for ongoing care for EDS after consultation with Mayo Clinic's EDS clinic relies on established care with a local PCP for long-term follow-up and follow-through on the treatment plan. The EDS care team provides diagnostic evaluations and treatment recommendations to be carried on with primary care providers.

Ehlers-Danlos syndrome care at Mayo Clinic (https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/care-at-mayo-clinic/mac-20362179)
· Ehlers-Danlos syndrome affects many different body systems, so your team will include different specialists involved in your care. At Mayo Clinic, your team may include specialists in medical genetics and physical medicine and rehabilitation — as well as vascular, cardiovascular, neurological, orthopedic and pediatric surgeons, if necessary.
· There are many different types of Ehlers-Danlos syndrome and the symptoms can overlap. Mayo Clinic physicians have extensive expertise in the condition, so they can quickly determine a precise diagnosis and treatment plan.
· Long-term management. The goal at Mayo Clinic is to propose a long-term management plan that can be followed by your local primary care physician.

Here is a link to the healthcare directory kept up-to-date by the EDS Society listing local providers.
- EDS Healthcare Professionals Directory https://www.ehlers-danlos.com/healthcare-professionals-directory/

How things work is explained in the 2 documents attached: Frequently Asked Questions and Your Next Steps: EDS Clinic

With respect to virtual appointments, I know that you were caught in the transition of federal and state executive orders (not Mayo Clinic specific) regarding exceptions that were made during the pandemic. In order to have out-of-state medical care, the provider must be licensed in the state where you live. Again, this is a regulation nation wide and not Mayo Clinic specific. Thus, like you, I am confused that you were told that EDS clinic only does virtual appointments. I would ask for clarification.

I see that poor communication or mixed messages has also occurred with autonomic neurology and gynecology. You probably won't like what I'm going to suggest, but have you talked to the Office of Patient Experience about these examples too? There seems to be a common and repeating theme here.

My tips would be to reach out to nurse Jessica Gehin via the patient portal (although I suspect you have) or call the clinic directly 904-956-8887.