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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 [...]
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Rare Diseases: A double-zebra
In preparation for Rare Diseases Day, 2019, I was able to interview Tianne, 24, who lives with both Ehlers-Danlos Syndrome and Marfan Syndrome (yes, it’s possible to have two connective tissue [...]
Rare Diseases: Kyphoscoliotic Ehlers-Danlos Syndrome
I had the chance to ask 30-year-old Emily, who lives with Kyphoscoliotic Ehlers-Danlos Syndrome some questions about her journey thus far. Diagnosed at 25 after seeing multiple specialists, [...]
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 [...]
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 [...]
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 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 [...]