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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 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 [...]
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 [...]