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!
Posted
The Power of a Diagnosis
*Trigger warning: mentions adverse mental health effects of medication/suicidal ideation* In the lead up to Hypermobility Awareness Week, asked Sarah from Western Australia about her experience [...]
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 Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Management Skills, Marfan Syndrome, Pain Management, Therapy Options
Posted Finding your way to keep moving forward with Hypermobility
Hypermobile Ehlers-Danlos Syndrome a genetic condition, it is in our DNA, and it’s NOT CURABLE! I have written that in capitals because it’s a concept that’s hard to grasp. Take [...]
In Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Management Skills, Marfan Syndrome, Pain Management, POTS, Therapy Options
Posted Therapy Spotlight: Paediatric Physio
We are doing a series on different therapies over the next few months, and are interviewing some therapists who have experience working with hypermobility conditions. To kick us off, we have [...]
In Adults, Community, Disability Awareness, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Marfan Syndrome
Posted Hypermobility Awareness Week 2019
While the whole of May has become the month to recognise & raise awareness of The Ehlers-Danlos Syndromes (EDS), we have chosen one week, May 25th-31st to raise awareness of HYPERMOBILITY, [...]
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 Anxiety, Chronic Illness, Ehlers-Danlos Syndrome, Grief, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Management Skills, Marfan Syndrome, Mental Health, Mindfulness, Pacing, Self-Care
Posted 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 hypermobility can face during the holidays and some suggestions on how we might [...]
By Brittany App
In Anxiety, Boundaries, Chronic Illness, Ehlers-Danlos Syndrome, Emotional Impacts, Grief, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Management Skills, Marfan Syndrome, Mental Health, Mindfulness, Self-Care, Service animals, Thought Management
Posted Not just surviving the holidays: Part 1
For a lot of people, the holidays are a really exciting time. There are cookies and chocolate, hot cocoa, Santa, presents, shopping and family time. Those exact same things can be the most [...]
In Community, Ehlers-Danlos Syndrome, Hypermobility Information, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Pain Management, POTS, Self-Care
Posted 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 conference day, from a seasoned conference attendee! 1. Stay [...]