Julia’s Favorite Resources

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.

Healthcare Providers and Support in Madison, WI

  • 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.
  • 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.

Mindfulness/Meditation

  • Center for Healthy Minds App: This app guides you through a holistic approach to well-being and happiness. It takes you step-by-step with options for short and long practices, sitting and active practices. Backed by the science of the Center for Healthy Minds, it’s great for beginning or seasoned meditators.
  • Anytime, Anywhere Meditation (taught locally–ask me for referrals) or Joy of Living programs: These beginning meditations programs are a great place to start with meditation. They’re based on 3 aspects of mindfulness: awareness, loving-kindness and compassion, and wisdom. While these aspects are from Buddhist origins, these programs are taught in a secular way.
  • Tara Brach is a respected meditation/mindfulness teacher. She has many free resources online. Just Google to find more than you could listen to!
    • She’s know for a technique called RAIN which is great to work with challenging emotions.

Pain

  • Curable App: This app teaches strategies for living with chronic pain. This is very helpful to reframe your experience. The app does have a monthly charge however, if you use this link you can get 6 weeks free to try it out.
  • Explain Pain: I love this book. This explains pain in easy-to-understand metaphors and diagrams. It gives a framework for learning to live with chronic pain.
  • Tara Brach has many free webinars and meditation to work with pain. 

Movement & Misc.

  • Julia’s Book List: Here is a collection of some of my favorite books. You’ll find health science, embodiment, EDS… The whole shebang.

Ehlers-Danlos Syndrome (EDS)

  • Zebra Club: Jeannie Di Bon is an internationally renowned expert on stabilizing and strengthening hypermobile bodies. Her Zebra club is an affordable app with on-demand exercise routines. I highly recommend this if you want to workout at home.
  • Ehlers-Danlos Society: This is international EDS support organization. Check out their community resources section for printed materials and webinars about EDS. Lots of good information.
  • Chronic Pain Partners: Another EDS support website. There are support groups, helpful articles, and webinars.
  • Leslie Russek: 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.
  • 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 podcast: Hosted by Linda Bluestein, MD, a doctor who specializes in EDS and other connective tissue disorders, the Bendy Bodies podcast features interviews covering a wide range of hypermobility topics. Emotions, pain management, education—Linda covers it all.

Teens

  • iBeatPain app: This app, from the Mayo Clinic, is especially designed for teens living with chronic pain.
  • KidsHealth.org: Resources for kids with chronic pain.
  • PainBytes: A series of videos created for kids about living with pain.
  • WebMap App: This 5-6 week cognitive-behavioral program developed by the Seattle Children’s Hospital is for teens with chronic pain. The app looks out-of-date so you may need to use an old phone for it!