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!
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 […]
When the pieces finally fit: Hypermobile-EDS
Sometimes I look back over my life, and I am thankful that I was born in the modern era. Ehlers-Danlos Syndrome runs in families. Considering all the trouble we have in 2019, to get the correct diagnosis, it is a miracle that our families didn’t die out a long time ago!! My story begins in […]
Finding your way to keep moving forward with Hypermobility
Hypermobile Ehlers-Danlos Syndrome a genetic condition, it is in our DNA, and it’s NOT CURABLE! I have written that in capitals because it’s a concept that’s hard to grasp. Take it from me, ‘grasping’ is not something I do well physically at the best of times. After finally getting a diagnosis at 30 years old […]
Therapy Spotlight: Paediatric Physio
We are doing a series on different therapies over the next few months, and are interviewing some therapists who have experience working with hypermobility conditions. To kick us off, we have Ashleigh Palombi, a Paediatric Physiotherapist on the Northern Beaches of Sydney! What’s the best part of being a paediatric physio? The best part is […]
Hypermobility Awareness Week 2019
While the whole of May has become the month to recognise & raise awareness of The Ehlers-Danlos Syndromes (EDS), we have chosen one week, May 25th-31st to raise awareness of HYPERMOBILITY, with our ‘The Hype About Hypermobility’ campaign. Hypermobility can be a symptom of EDS, but it’s also a symptom of other conditions which also […]
One step forward, two steps back
I am sure that everyone at some point has been able to relate to the phrase, “one step forward, two steps back”. Right? For those of us with a chronic illness, it can feel like that is exactly how we live life. You get a little better, maybe a new medication starts help, or a […]
Rare Diseases: What type of Zebra am I?
An Interview with Alexandra M.K. who is still wondering, “what type of zebra am I?” Your age: 36 What’s your diagnosis? Ehlers-Danlos Syndrome and the geneticist is still looking to understand which type is the dominant one in me. They have found multiple mutations because both of my parents have different types of EDS in […]
Rare Diseases: A double-zebra
In preparation for Rare Diseases Day, 2019, I was able to interview Tianne, 24, who lives with both Ehlers-Danlos Syndrome and Marfan Syndrome (yes, it’s possible to have two connective tissue disorders, although this makes Tianne doubly rare! A double-zebra!). Age at diagnosis I received a diagnosis of ‘hypermobility syndrome’ around two weeks of age, […]
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.