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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 [...]
What Christmas in Africa taught me
I have a confession to make: I’m not a huge ‘Christmas-lover’. I used to be. But a lot of things changed for me between 2006-2009, including the passing of my grandma with whom some of my [...]
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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 [...]