Posted
Double Zebra
Rare diseases are highlighted on Rare Disease Day each year. This year we featured Nail Patella Syndrome combined with Hypermobility Spectrum Disorder!
In Chronic Illness, Disability, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Independence, Joint Hypermobility Syndrome, Thought Management, Understanding
Posted When the pieces finally fit: Hypermobile-EDS
Sometimes I look back over my life, and I am thankful that I was born in the modern era. Ehlers-Danlos Syndrome runs in families. Considering all the trouble we have in 2019, to get the correct [...]
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 Disability, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome
Posted 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 this Dec 7-8. Here is what I found and wanted to share [...]
In Chronic Illness, Disability, Ehlers-Danlos Syndrome, Emotional Impacts, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, Mental Health, Pain Management
Posted 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 to the doctors when something is wrong. Makes sense, right? I mean they’re there to [...]
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, Pacing, Pain Management, Self-Care, Therapy Options
Posted 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 I can cope a little longer on my own”. When it comes to Occupational [...]
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 [...]
In Chronic Illness, Disability, Ehlers-Danlos Syndrome, Health & Hypermobility, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, Mental Health, Self-Care, Therapy Options
Posted Getting Your Daily Dose of Movement
What’s one of the ways your ‘Daily Dose of Movement’ can help you? Exercise is beneficial for management and prevention of acute and chronic mental illness. It is a fantastic part of your tool [...]
By Brittany App
In Adapting, ADL, Anxiety, Disability, Ehlers-Danlos Syndrome, Emotional Impacts, Hypermobility Spectrum Disorders, Independence, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, Medical Experiences, Mental Health, Self-Care, Service animals
Posted My Service Dog; My Lifeline
Service dog. What flashes in your mind when hearing those words? A blind man with a vision dog, a veteran who is an amputee? While these are two valid types of work of service dogs, there are [...]