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!
Rare diseases are highlighted on Rare Disease Day each year. This year we featured Nail Patella Syndrome combined with Hypermobility Spectrum Disorder!
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 [...]
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 [...]
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 [...]
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 [...]
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, [...]
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 [...]
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 [...]
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. [...]
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 [...]