As I work with my clients, I gather a list of resources that are helpful. In no particular order, here are some of my favorites. If I mention a resource to you that is not listed here or if you find something new, give me a nudge. I’ll be happy to add it.
Dr. Rudin is an excellent (and very friendly) doctor who has expert knowledge of Ehlers-Danlos Syndrome (EDS). He works at the UW Health system. Many of my clients have seen him and he has been helpful with getting a diagnosis.
Tiffany Houdek is a Physical Therapist at UW Health who also works with EDS patients. She has been very helpful to some of my clients with chronic pain and stressed psoas muscles.
Michael Griggs is a Physical Therapist who has extensive knowledge of EDS and HSD. He specializes in manual therapy. He is currently working on co-presenting a paper on hypermobility to other physical therapists.
Support and Education
EDS Wisconsin provides support and resources to those affected by EDS. I can’t say enough good things about this group. They have support groups, information, fundraisers… They do really good work to help spread the word about EDS is and how it affects people. If you want to follow the latest EDS research, sign up for their Facebook page. Their feed is excellent.
The Ehlers-Danlos Society
Chronic Pain Partners
Leslie is a Physical Therapist at Clarkson University who specializes in hypermobility. She has an extensive library of recorded webinars and handouts about EDS and HSD. Every week or two, she offers a new webinar and they’re always thorough and helpful. I recommend you get on her mailing list to keep up with the latest.
Ehlers-Danlos Syndromes Physician Education (Videos)
The Ehlers-Danlos Syndromes Physician Education website is a source for CME credits about EDS. If you want to learn more about EDS, I recommend watching the videos on this site. You don’t need to register to watch them–just click on “Modules” in the navigation bar. The videos are a little “medical-y” (slightly dry and technical) but they give a great overview of EDS. This is a good place to start.
Hypermobility Happy Hour Podcast
The Hypermobility Happy Hour is a podcast devoted to spreading awareness of hypermobility and offering resources and information to people living with hypermobility.
Bendy Bodies with the Hypermobility MD Podcast
Linda Bluestein, MD, is a doctor who specializes in EDS and other connective tissue disorders. She hosts the Bendy Bodies podcast where she interviews people to discuss a wide range of topics about living in a hypermobile body.
Julia’s Recommended Books
Like to read old fashioned books? I have a bookstore of recommended books on everything from meditation to happiness. For books specific to hypermobility, click here. Many of these books are in the Madison library system so don’t forget to support your library too!
Center for Healthy Minds Meditation App
If you like guided meditations, I recommend trying the Center for Healthy Minds App. This app guides you step-by-step into a meditation practice. It’s made for busy people so you always have the option of either sitting for your meditation, or listening while doing other activities. Based on four principles: awareness, connection, insight, and purpose, it’s scientifically backed to promote wellbeing. I highly recommend it.
Jeannie Di Bon and the Zebra Club
Jeannie is a well-respected Pilates teacher in the UK who specializes in EDS and HSD. Her Zebra Club app is designed specifically for hypermobile people. If you want to work out at home with support from online instructions and a supportive community, this is the place for you. Jeannie is great.
The Curable App supports people with chronic pain through education, reflection, and meditation. It has great explanations about how pain functions in your body and helps you to explore your relationship with your pain. The app does have a monthly charge however, if you use this link you can get 6 weeks free to try it out.