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Our Most Recent Posts

The daily realities of Marfan Syndrome

At the beginning of February, I made a vow to write at least one blog post a week in aid ...
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Finding my voice through Marfan Syndrome

My life with Marfan Syndrome has been incredibly challenging, to say the least. But do you know has been one ...
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Learning you have Marfan Syndrome

When I first received my Marfan Syndrome diagnosis many years ago, I felt like I had been given a death ...
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HSD, JHS, hEDS… oh my!

There is so much confusion in our community about hypermobility diagnoses following the release of new criteria in March 2017 ...
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What is Marfan Syndrome?

Here at Hypermobility Connect, we like to get behind the awareness days/months that are in place for some of the ...
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6 Tips to Prepare You for Mystery Injuries || Hypermobility Connect

6 Tips to Prepare You for Mystery Injuries

We have all had bruises that we can’t recall the origin of, we’re Hypermobile! Maybe a scar or two that ...
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Making the Most of Time Indoors (when you have a chronic condition) || Hypermobility Connect

Making the most of time indoors (when you have a chronic condition)

If you’re living with a chronic condition like Marfan Syndrome, Ehlers-Danlos Syndrome or any hypermobility condition, and you’re anything like ...
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An Ordinary Day: Kids with Rare Genetic Conditions

I had the pleasure of interviewing Karen Haberberg, acclaimed New York photographer about her recent photo book ‘An Ordinary Day: ...
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The Four Pillars

 

  • 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.

 

  • 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.

 

  • 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.

 

  • 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.

michelle