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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 diagnosis? Ehlers-Danlos Syndrome and the geneticist is still looking to [...]
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 [...]
In Adapting, Carers, Disability, Ehlers-Danlos Syndrome, Emotional Impacts, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, Self-Care
Posted 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 [...]
In Adapting, ADL, Disability, Hypermobility Spectrum Disorders, Independence, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, Self-Care, Therapy Options
Posted 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 solidifying of our core skills and the development of skills [...]
In Adapting, ADL, Chronic Illness, Disability, Dressing, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Independence, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, Therapy Options
Posted 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 professionals who work in a range of settings, from hospitals [...]
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 Syndromes? I think about it frequently, in this line of business. In fact, I’m confronted [...]
A positive pain management experience
Earlier this year I was referred to the Pain Management Clinic at my local hospital, and last month I had my very first appointment with the Pain Management Consultant. The reason my doctor [...]
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, and sports (ha, that was a while ago!). And while they all [...]
When Modern Feminism Isn’t Inclusive of Disability
I’m going to be contentious here. I have a problem with the modern feminism movement. I am a feminist; wholeheartedly and unashamedly. But part of being a feminist is holding both yourself and [...]
In Adults, Chronic Illness, Disability Awareness, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, Pain Management
Posted 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. These people have a variety of diagnoses including Generalised [...]