Hi @soteloli, welcome to Connect. I think Mayo Clinic would be a good choice for you. They are very good at diagnosing health issues that are difficult to diagnose. Can you ask your rheumatologist to give you a referral to Mayo Clinic?

If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

John

Hi:
Mayo does not have a good Department for EDS. You need to find a specialist in that field but for you, you would have to find 2 Specialists, one for each.
Take Care

Hello @soteloli,

I'm so glad you've joined this group and reached out to the Connect community with your concerns – welcome.

First, I'd like to offer some information about your diagnosis of hypermobility (also known as Joint Hypermobility Syndrome), and perhaps clear up some misconceptions about the link to Ehlers-Danlos Syndrome (EDS).
It is possible to have joint hypermobility without necessarily having EDS, but sometimes, patients with joint hypermobility also have the hypermobile type of EDS.

According to the Ehlers-Danlos Society, https://www.ehlers-danlos.com/what-is-hsd/:
Hypermobility spectrum disorders (HSD) are a group of conditions related to joint hypermobility (JH). HSD are intended to be diagnosed after other possible answers are excluded, such as any of the Ehlers-Danlos syndromes (EDS) including hypermobile EDS (hEDS).

EDS is a group of inherited connective tissue disorder (ICTD) that affect your connective tissues. Connective tissue is a complex mixture of proteins and other substances that provide strength and elasticity to the underlying structures in your body.affects the production or processing of collagen. https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125

Although there is substantial overlap in the symptoms between EDS subtypes and other connective tissue disorders including hypermobility spectrum disorders, there is a lot of variability, so a definitive diagnosis for either condition can be complicated.

Mayo Clinic in Rochester, Minn., is ranked among the Best Hospitals for rehabilitation by U.S. News & World Report, and I would sincerely encourage you to call Mayo Clinic at the contact information that @johnbishop has provided. Our representatives/schedulers will ask questions to help direct you to the best specialist.
I'm also tagging @jigglejaws94 and @findinghope23 who've mentioned hypermobility and/or hypermobile EDS, to see if they might have some more thoughts to share.

Lastly, (at the risk of giving you even more to read), I'd like to offer some information about EDS care at Mayo Clinic. Mayo Clinic doctors see hundreds of people with Ehlers-Danlos syndrome every year. The Connective Tissue Disorder Clinic, https://mayocl.in/2zPPxQY diagnoses and coordinates care for people affected with inherited or genetic forms of connective tissue disease
The goal at Mayo Clinic is to establish a long-term management plan for people with these disorders is to be managed by their local primary care physician.https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/care-at-mayo-clinic/mac-20362179

Let me know how else the Connect community can help, @soteloli and also if you need any further information?