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.
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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!
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. […]
Not just surviving the holidays: Part 2
Following on from Not just surviving the holidays: Part 1, in this post we discuss some more challenges people with hypermobility can face during the holidays and some suggestions on how we might overcome them to enjoy the holidays! Grief Dealing with grief at Christmas can be extremely difficult, and a real roller coaster of […]
Not just surviving the holidays: Part 1
For a lot of people, the holidays are a really exciting time. There are cookies and chocolate, hot cocoa, Santa, presents, shopping and family time. Those exact same things can be the most triggering for people with chronic illnesses. Sometimes the holidays is what people stress about the most. It ends up being about surviving […]
10 tips for surviving conference day
If you’re heading to the Ehlers-Danlos Society Learning Conference in Australia in December, here are my 10 tips for surviving conference day, from a seasoned conference attendee! 1. Stay hydrated The venue will be air-conditioned which for some people tends to wreak havoc with hydration. Remember your water bottle, and make sure you drink lots […]
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.