Posted
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 with…. only to, 7 years later, be told that’s [...]
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 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 Boundaries, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, Mental Health, Pacing, Psychology & Counselling, Self-Care
Posted 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 we’ve come up with 7 ways to crisis-proof the holidays with hypermobility. 1. [...]
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 [...]
By Brittany App
In Adapting, Chronic Illness, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Identity, Loeys-Dietz Syndrome, Marfan Syndrome, MCAD, POTS, Thought Management
Posted 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? You know, the do-re-mi-eds-pots-mcad-ocd medical dictionary? Do they define [...]
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 [...]