Double Zebra
Nail patella syndrome is a genetic condition that effects the nails, knees (patellae), elbows and pelvis. The patellae (knee caps) ...
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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 ...
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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 ...
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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 ...
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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 ...
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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 ...
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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 ...
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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 ...
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7 ways to crisis-proof the holidays with hypermobility
This time of year can be stressful, as well as exciting and joyful. To keep the stress to a minimum ...
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Your Guide to Accessing the EDS Conference Sydney
I visited the Ehlers-Danlos Society Learning Conference venue at Macquarie University in October in preparation for the Conference in Sydney ...
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Go see your doctor when you’re well
What a novel idea! Go see your doctor when you're well? Why would you do that? We usually only go ...
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What if my OT doesn’t understand hypermobility?
All occupational therapists have similar core skills, the ones taught in university. Where we end up after university determines the ...
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When is the right time to see an occupational therapist?
People often hold off seeing health professionals until things are really, really bad. They think “Oh, I’ll just see if ...
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Why see an Occupational Therapist?
So why would you see an Occupational therapist? There are many reasons why! Occupational Therapists (OTs) are trained allied health ...
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What do mental health professionals do?
There is much confusion among the patient (and sometimes the health community) about what mental health practitioners roles are - ...
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Did that just come out of your mouth? R U OK Day 2018
Timing is important. While you’re busy doing something else; when you’re about to get on a 12-hour flight; when your ...
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Are you committed to your therapy journey?
Are you committed to your therapy journey? Do you do what your therapist tells you to do? Do you follow ...
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Caring for the most important part of you!
Caring for the most important part of you (your mental health) while simultaneously managing an unpredictable physical condition is nothing ...
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Zebra? Why not the giraffe?
Have you ever wondered how we ended up with a Zebra as the “mascot”, if you will, for the Ehlers-Danlos ...
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Foot & Ankle Pronation in Hypermobility
A short video clip from Podiatrist Andrew Bull, a member of our health professional network on foot & ankle pronation ...
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Perfectionism vs. Chronic Condition
When I was diagnosed in London by the wonderful Prof. Rodney Grahame, I distinctly remember him saying that hypermobility conditions ...
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Building each other up: Why we need community
Over the years I have been involved in a wide range of communities, from school to university, Guiding/Scouting Movements, church, ...
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Allied Health & Hypermobility Conditions
When people are diagnosed with a hypermobility-related condition, they are often catapulted into the world of medicine and allied health ...
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Top 10 most challenging symptoms of hypermobility conditions
I recently did a survey of our online community about their biggest struggles relating to living with their hypermobility condition ...
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The Burger Joint
Ever been to a burger joint? Ever hear of joint hypermobility? What on earth do the two have in common? ...
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Hypermobility: The condition that takes away…
Hypermobility is a stealer. It steals so much from those who live with it, making it feel like the label ...
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4 keys to hypermobility pain management
I’m sorry to hear that you, or your child, are experiencing so much pain. Pain is a big problem for ...
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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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5 Tips for Managing Christmas Day Anxiety
If you’ve been living with anxiety for a while, chances are you know whether a day like Christmas day will ...
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All I want for Christmas is for you to read this post
Following on from last weeks post about What we need at Christmas, we recognise that it’s extremely difficult for people ...
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What do you need people to understand & do for you this Christmas?
Let’s face it, Christmas isn’t always joyful. I don’t think I had really ever grasped that until just over a ...
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Seven of the Best General Aids for Hypermobility
Following on from our Top 5 Kitchen Aids from our #HypermobilityHelp series, it’s time to look at the general aids ...
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Top 5 Kitchen Aids for Hypermobility
Over the last few months, I’ve been sharing on our Facebook & Instagram some of my favourite gadgets and assistive ...
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10 Things I Hate About You, Modern Medicine
The longest relationship of my life, apart from those with my family members, is my relationship with modern medicine. It’s ...
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Introducing Lucy, our newest blogger!
Lucy Atkinson, from the North West of England, UK, has joined our Blogging Team here at Hypermobility Connect. Lucy lives ...
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You are different. You can’t have that life!
Ever have those days where you desperately want to be normal? And you feel like you're so different, and you ...
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10 Things a Doctor Should Never Say to a Patient with a Chronic Condition
As patients with chronic conditions, we’ve all heard doctors, and health professionals say ridiculous things to us, have we not? ...
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Suicide Prevention. Because it happens.
It happens. It can happen to anyone. There really isn’t a stereotype of "people who have suicidal thoughts". It could ...
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Hyper-vigilance vs. Complacency in Hypermobility
Since the age of 12, due to the regularity at which I needed physio or specialists appointments, my family and ...
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Mobile Device Ergonomics for Hypermobility
We use mobile devices such as phones and tablets more than we ever have. We are the mobile generation. And ...
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Workspace Ergonomics for Hypermobility: Part 2
(This post contains affiliate links) The previous post in this series Workspace Ergonomics for Hypermobility: Part 1 talked about the posture ...
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Workspace Ergonomics for Hypermobility: Part 1
We spend WAY too many hours of our lives sitting, whether that it is in cars, on the couch, or ...
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Living life with the parking brake on
I often feel like I am living life with the parking brake on. If you drive a car and have ...
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10 reasons why I don’t do public transport with hypermobility
”Use public transport," they say, "it’s better for the environment". Do you know what it’s not better for? Me! I ...
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Are hypermobile party tricks OK?
Few things get me extremely fired up and angry. But this is one of them… I have had numerous encounters ...
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To the woman who chose not to judge me: Thank you
To the woman who served me in the RMS and chose not to judge me, Thank you. Thank you for ...
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You are not your diagnosis
When you live every day with a chronic condition, it's easy to forget that you are not your diagnosis. Your ...
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Self-Care: Filling up your cup
When things go pear-shaped, which, when you’re a bendy body happens frequently, the one thing we can rely on is ...
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Self Care: Creating a Self-Soothing Box
When I worked as a Paediatric Sensory OT, I would often suggest to families or school teachers that children with ...
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Dealing with our Anger
In early 2017, the new nosology for The Ehlers Danlos Syndromes was released and caused quite a lot of controversy ...
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Am I ‘normal’?
I’ve just finished having a conversation with a friend about "normal"… Normal was a word that we were steered clear ...
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To hide or not to hide? That is the question
Talking about hiding or displaying your condition may seem like a somewhat controversial topic to those who are deeply embedded ...
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Retraining your mind
Really? Being more positive JUST takes practice? To be honest, today I could have told Mr McGill to go jump ...
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Do I have to be happy about another year?
There is this unwritten law that at the beginning of a new year, we look forward to another year ahead ...
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An Intentional New Year
Historically, I have never been a "New Years Resolution" kinda gal. In recent years, I’ve probably been more of a ...
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The Hangover, Hypermobility Style
Chances are if you’re reading this, you or someone you love is hypermobile. Therefore, there is an even better chance ...
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Just say no. Don’t make excuses
Excuses. We all make them, whether to ourselves or publicly, myself included. We’ve all heard some really bad ones. And ...
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Holiday Season Survival 101
The holiday season can be fraught with obstacles for people with chronic health conditions. That's why we need to talk ...
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Not all ‘zebras’ are ‘zebras’
I was on a business-related Facebook forum recently, and the owner of the forum posted about her latest in a ...
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When It Is Time to Leave Home
When it is time to leave home for the first time, regardless of our age, we all face it with ...
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From ‘sick kid’, to just being me
I was chatting with a friend the other day about a young person who had lived with a chronic illness ...
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I just got a diagnosis and no one understands!
The moment you get a diagnosis, a huge number of things can change for you, yet, as astounding as it ...
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When the world is so NOT your Oyster
When you can no longer pursue your dream career, you find yourself wondering - what on earth am I going ...
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Ditch the notebook & use Evernote
(This post contains an affiliate link) I had an awesome idea the other day… in one of the two places ...
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When hypermobility steals from you
I have always watched the Olympics with awe and wonder….and a tinge of sadness. Because hypermobility stole something from me, and ...
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Jo Berry on “You Can’t Ask That”, ABC TV
In case you missed seeing it, our very own resident blogger, Jo Berry was on the ABC's "You Can't Ask ...
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Priority: Me
A recurrent theme in my life is feeling guilty for choosing myself, for making myself my priority. It’s something that I’m ...
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Be Prepared for the Aftermath
Launching a website / online community has definitely reminded me of all that my hypermobile body brings with it plus ...
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Relatable toys: An interesting find
I recently asked our resident bloggers for their opinions on this picture that I found. I was searching for relatable ...
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Reality with a positive spin
We realise that a lot people with hypermobility would find the blogging brief: "reality with a positive spin" quite challenging, ...
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5 Tips for Looking After Little People
I am blessed with three gorgeous nieces who arrived 8, 6 and 1.5 years ago (update, there is now a ...
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Never Tell Me Never
Ever had one of those experiences of remembering exactly where you were when you read or heard something? For example, ...
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STOP THINK DO
I'm going to share with you the best tool in my personal & professional hypermobility toolbox. Let me introduce you ...
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A letter: For when you’re really hurting…
Are you really hurting? Does life really suck for you right now? Feeling alone? Invisible? I just wanted to let ...
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High School with Undiagnosed Hypermobility
Let us be honest. I hated high school. It was one of the most miserable times of my life. I ...
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SHOUT A LITTLE LOUDER: Ehlers-Danlos Awareness Month (May)
If you have Ehlers-Danlos Syndrome one of the very first things you would have done is learn how to pronounce ...
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Fatigue: The battle of mind & body
I'm writing this while yawning my head off and trying to stay awake on an interstate flight after a 4-day ...
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Revealing your diagnosis
Working out who, what, why and when to share your hypermobility diagnosis can be very confusing, and the cause of ...
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