Learn More About Hypermobility Conditions
If you’re looking to learn more about Hypermobility Conditions, this is the best place to start on our website.
Find help getting a diagnosis in Australia.
Getting the right diagnosis is a crucial part of the hypermobility journey. However, hypermobility conditions are still under recognised, making diagnosis challenging. This page might help you start working out who you need to see in your state or territory.
Find a Health Professional
Are you looking for a health professional in Australia who has an interest in working with people with hypermobility? You are welcome to email us and we will provide you with names if we are able.
Feel less alone!
Reading the blog posts of others who are living a life with hypermobility can be reassuring, comforting and can help reduce feelings of isolation.
We also have a Facebook Group for our Hypermobility Connect community which is a helpful, hopeful and healthy place to learn and share life with hypermobility.
My health professional is amazing!
My health professional is AMAZING and I want to share their details with you!
(Don’t worry, we check with them first before adding them to our database!)
I’m a fabulous health professional!
I want to join the database & mailing list!
I’m a Health professional & would love to write!
We are always looking for health professionals to voluntarily contribute a piece to our blog from their professional perspective. If this sounds like you, please apply now!
Double Zebra
Rare diseases are highlighted on Rare Disease Day each year. This year we featured Nail Patella Syndrome combined with Hypermobility Spectrum Disorder!
The Power of a Diagnosis
*Trigger warning: mentions adverse mental health effects of medication/suicidal ideation* In the lead up to Hypermobility Awareness Week, asked Sarah from Western Australia about her experience living with a hypermobility related disorder. Sarah is now 35 years of age, has had symptoms her whole life, and was only diagnosed at 33, with Hypermobility Spectrum Disorder. […]
Why is Rehabilitation of the hip and pelvic area so important to Hypermobile Individuals?
I am a physiotherapist in Brisbane with a special interest in hypermobility related connective tissue disorders so most of the clients I see have hypermobile-Ehlers Danlos Syndrome, Hypermobility spectrum disorder or Asymptomatic Generalised Hypermobility. I have observed in my clinical practice that around 90% of symptomatic hypermobility clients have hip or pelvic issues. Common complaints […]
Genome, we have a problem: diagnosis change
How would you feel if you’d been battling along, learning everything you could about the rare disorder you’d been diagnosed with…. only to, 7 years later, be told that’s not your disorder at all? To have your diagnosis change? It’s like having someone call PLOT TWIST in the middle of your life. One of a […]
Marfan Syndrome: It can be a pain in the behind
February is Marfan Syndrome Awareness month. Our resident Marfan Syndrome blogger, Lucy, has this extremely important message to share: Marfan Syndrome can be a real pain in the butt – literally. She has very bravely shared this glimpse into her life, in a bid to increase awareness of Marfan Syndrome, and connective tissue disorders. If […]
Christmas Day: It is forever full of surprises
Christmas Day is forever full of surprises. When you’re little, it’s the right kind of surprises – “What has Santa brought?” “What presents will I get from family?” “How much fun are we going to have today?” or “How much junk food will I get away with eating?” When you’re a bit older, it’s more […]
What Christmas in Africa taught me
I have a confession to make: I’m not a huge ‘Christmas-lover’. I used to be. But a lot of things changed for me between 2006-2009, including the passing of my grandma with whom some of my greatest Christmas memories lay, and whom I most greatly associated Christmas Days. Grief changes things as well as people. […]
A lifetime of missed opportunities
It is clearer now, more than ever, that people like Hallie, are having the trajectory of their lives determined by the missed opportunities of doctors to make an educated diagnosis of Hypermobility-related disorders, such as Hypermobile Ehlers-Danlos Syndrome. As you will read, Hallie is one of the rare few who have defied the odds, persisted […]
Our 4 Part Mission Statement
Recognise
- To increase awareness & recognition of hypermobility conditions across both the medical and general communities. Earlier recognition leads to better management and improved quality of life for people living with these conditions.
- For some conditions (Marfan Syndrome, Loeys-Dietz Syndrome and Vascular EDS) early recognition can mean the difference between LIFE & DEATH.
Educate
- To educate medical and allied health professionals about hypermobility and it’s related conditions
- To educate people living with hypermobility-related conditions about their condition and options for treatments and management
- To educate the wider community about the real-life impacts of hypermobility on the person living with hypermobility, and their family.
Accept
- To encourage acceptance of symptoms, variation in presentation and the significant day to day impacts of hypermobility conditions, by medical and health professionals.
- To help people living with hypermobility-related conditions accept their reality and learn to live a happy, hopeful and healthy life with their condition
- To help the wider community accept the reality of hypermobility, it’s ability to devastate an individuals quality of life, including the ability to work full-time, if able to work at all.
Connect
- To connect people living with hypermobility to each other, for mutual support and appropriate peer education.
- To connect people living with hypermobility to medical & health professionals who can assist them with diagnosis, treatment & management of their condition
- To connect medical & health professionals to each other, for networking and professional support opportunities.
WHY HYPERMOBILITY CONNECT?
Having practised as an occupational therapist with a special interest in working with people with hypermobility, I was given unique insight into the challenges faced by people of all ages, stages & locations in Australia. Whilst I cherished my time practising as an OT, there came a point where I had to step back and see the bigger picture.
As one person, I was only able to help a finite number of people on their journey with hypermobility and realised that this wasn’t enough for me – or for you. The idea of Hypermobility Connect has been brewing for years and has now been a couple of years in the making. It’s a true work of the heart because as a fellow bendy-body who wasn’t formally diagnosed until I was 23, I remember so vividly the journey that was… and I look forward with hope at the continuing journey ahead.
Welcome home to Hypermobility Connect.