New England area Hypermobility Resources

Physical Therapy

Muldowney Physical Therapy, Cranston and North Smithfield, RI– They have taught me personally so much, and I highly recommend them.   They specialize in treating patients with EDS and other hypermobility conditions.  I really trust them to diagnose SI joint issues and properly (and gently!) adjust your alignment.  They can also teach some of these adjustments to the patient and/or a family member, so that if you come from far away, you aren’t dependent on coming back every week.

They are also very knowledgeable about mast cell activation syndrome, because this is a condition that affects so many people with hypermobility.  Kathleen Muldowney taught me a lot about learning to recognize the relationship between my mast cell issues, general inflammation in my body, and what’s going on with me, musculoskeletally.

Recommended by other patients:

Spaulding Outpatient Rehab Framingham location– multiple practitioners with experience in hypermobility conditions.   I have been told that some of the PT’s have EDS themselves, so they can speak from lived experience.

Healy Physical Therapy (multiple locations in RI)

Occupational Therapy (Hand and Wrist Splints)

Donna Van Helene, occupational therapist at Spaulding Rehab in Braintree.  I met her once (before Covid) and she was able to instantly identify certain things about my hands that no one’s ever been able to explain to me before.   She makes hand and finger splints for people with EDS and hypermobility, in order to help “retrain” them to use their hands in the most functional way.  I personally have not pursued the splints at this time (I actually don’t have too many hand issues, thankfully!) but I was so impressed with her knowledge.

Doctors (Musculosketal pain)

Dr. Lauren Elson— have only been working with her since this past winter but she was the first doctor I ever met who was actually knowledgeable about hypermobility (Dr. Eng, below, was the second).

She had some great recommendations and it’s been really helpful to learn from someone who actually has experience treating hypermobile patients.

Dr. Christine Eng— I met with Dr. Eng as well (when I get gung-ho about a topic, this is what I do!).  She gave me a lot of insight into what makes people with connective disorders different, and how our bodies may even heal from injuries differently.  She also taught me a lot about how the mind-body connection can play a role in hypermobility symptoms and our ability to heal.

Geneticists

Center for Human Genetics

Brigham and Women’s Genetics Clinic (I saw Dr. Rohanizadegan)

Patient Support Groups

I have learned SO much about hypermobility from this group: Ehlers-Danlos, Marfan and Related CTDs New England/MA Support Group.  For so much of my life I didn’t really understand hypermobility– but knew there were all these weird things that were “different” about my body.  This group has made me realize there is actually a name for what I’ve experienced, and that I am definitely not alone.

General Hypermobility Resources

EDS Life Hacks 

Ehlers-Danlos Society