What to look for in a health provider if you have hypermobile Ehlers Danlos or Hypermobility Spectrum Disorders.
Working solely in the hypermobility and invisible illness space for the last 4 years, allowed me to witness the rise in awareness of these conditions and the growing number of practitioners who provide hypermobility support in Perth. What a wonderful thing, to have more eyes on these conditions.
At the time I was studying Physiotherapy, close to a decade ago, hEDS or hypermobility was not on my radar. From all reports, it still isn’t a prominent topic of study at University.
This means, providers must seek out their own learning and experience in the area. Thankfully, these days, there are a lot of online learning options available for Physios and other health providers to become up to date.
Generally, a Physio who is engaged in continued learning is a physio you want on your side, as the evidence and best practices change over time.
I’d look to the Ehlers Danlos Society website, in their Health Professionals Directory to start searching for providers in your area. https://www.ehlers-danlos.com/healthcare-professionals-directory/
To differentiate between providers around you, consider what you are hoping to get out of your sessions with them:
Are you looking for a diagnosis?
Do you think medical management is an important starting point?
Do you require support to start moving and strengthening?
Are you experiencing persistent pain or recurring injuries?
Do you need lifestyle support, and help pacing your activities?
Having an idea on the ideal outcome you’re looking for will help point you to which health care pro to see first. Alongside Physios, you will find GPs, Occupational Therapists, Rheumatologists, Cardiologists, Psychologists and Exercise Physiologists, among others.
Consider what co-existing symptoms or conditions you are experiencing and the impact they have on you.
Did you know, Hypermobility is commonly linked with other conditions such as:
Dysautonomia, POTS
ADHD
Headaches and ‘Coathanger pain’
Gut issues like IBS
Allergies or intolerances
Mast Cell Activation Syndrome (MCAS)
Fatigue and ME/CFS
Joint subluxations or dislocations
Stretchy and slow healing skin
Endo, PMS
Knowing which symptoms are having the biggest impact on your life can help point you in the direction of who to see first.
Reaching out to the provider via their website or email address can be a great idea to have any questions answered before committing to an initial session. You will be able to find Physios who offer Telehealth appointments, if coming in person isn’t always an option for you. And you may find some who offer low sensory times to book in if that is your preference. If you are looking for movement support, then ensuring the clinic has movement options, like a small gym or pilates equipment is a good idea.
I hope this helps get you started on your search for the right practitioner. If you are looking for feedback from others, I’d look to the Facebook groups or Reddit to get referrals from your community as well.
Reach out with any questions, I’m happy to help.