Double Zebra
Rare diseases are highlighted on Rare Disease Day each year. This year we featured Nail Patella Syndrome combined with Hypermobility Spectrum Disorder!
The Power of a Diagnosis
The Power of a Diagnosis: lots of things change including how others treat you, what treatments you can access, but also, how you treat yourself!
Genome, we have a problem: diagnosis change
How would you feel if tomorrow your doctor called to say "diagnosis change"! It's like someone calling, "plot twist", right in the middle of your life?
Marfan Syndrome: It can be a pain in the behind
February is Marfan Syndrome Awareness month. Our resident Marfan Syndrome blogger, Lucy, has this extremely important message to share: Marfan Syndrome can be a real pain in the butt – literally.
A lifetime of missed opportunities
Many have the trajectory of their lives determined by the missed opportunities of doctors to make educated diagnoses of Hypermobility-related disorder.
When the pieces finally fit: Hypermobile-EDS
Ever done a puzzle without knowing what picture you were trying to make? Life with Hypermobile-EDS can be a bit like that, as Anel explains.
Finding your way to keep moving forward with Hypermobility
Sometimes we get stuck somewhere on our journey with hypermobility, and we have trouble moving forward. Finding your way is important, as Caitlin explains.
One step forward, two steps back
We've all experienced the feeling of taking one step forward, and then two steps back, right? Erica talks about her latest steps back & how she copes.
Rare Diseases: What type of Zebra am I?
Knowing you have symptoms of a condition as well as genetic mutations, but still not having a name for it can leave you wondering, what type of zebra am I?
Rare Diseases: A double-zebra
On Rare Disease Day, 2019, Tianne shares some of her story about living as a double-zebra - with EDS & Marfan Syndrome!
Because it could change a life: Marfan Syndrome
Because it could change a life: Marfan Syndrome is a rare connective tissue disorder with possibly fatal consequences if not detected early & managed.
You, me & my connective tissues
Relationships and connective tissue disorders can be full of challenges, embarrassing moments and growth opportunities. Just watch out for those hips!
Not just surviving the holidays: Part 2
Part 2 in our series "Not just surviving the holidays" we look at additional challenges people with hypermobility conditions face during the holidays
Not just surviving the holidays: Part 1
Are you prepared to ENJOY the holidays? Here are some top tips for enjoying not just surviving the holidays from Brittany & Michelle!
7 ways to crisis-proof the holidays with hypermobility
7 ways to crisis-proof the holidays with hypermobility.... here are our hot tips for a smooth & safe holiday experience
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? Isn't that a bit strange?
Do-re-mi-eds-pots-mcad-ocd medical dic-tion-ary
What alphabet do you use? The medical abbreviations that are common in the lives of a person with a chronic illness? Or something else?
What if my OT doesn't understand hypermobility?
A common question I get asked: What if my OT doesn't understand hypermobility? All OT's in Australia have similar core skills...
When is the right time to see an occupational therapist?
People are often unsure about when it's the right time to see an occupational therapist, so let's explore it! When IS the right time?
Why see an Occupational Therapist?
Occupational Therapists (OTs) are trained allied health professionals who work in a range of settings, from hospitals and nursing homes to private practice and schools.