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!
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, […]
Rare Diseases: Kyphoscoliotic Ehlers-Danlos Syndrome
I had the chance to ask 30-year-old Emily, who lives with Kyphoscoliotic Ehlers-Danlos Syndrome some questions about her journey thus far. Diagnosed at 25 after seeing multiple specialists, physiotherapists, occupational therapists and a finally a geneticist, Emily had four rounds of genetic testing to arrive at her diagnosis. “When I went to my first appointment, […]
Because it could change a life: Marfan Syndrome
Marfan Syndrome awareness month is upon us again! If you’ve followed my blogs in the past, you’re probably thinking “here we go again; she’s talking about Marfan Syndrome AGAIN” however raising awareness is of paramount importance to me & others who may not even know it yet. I will take any opportunity that I can […]
You, me & my connective tissues
Oh, the things I never thought I would have to explain. I’m 28, and I hobble into the physio rooms using a walking stick and the wall, trying for the life of me to pretend that everything is hunky dory because I know, I just know what my physio’s first words are going to be. […]
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.