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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 [...]
Jo Berry on “You Can’t Ask That”, ABC TV
In case you missed seeing it, our very own resident blogger, Jo Berry was on the ABC’s “You Can’t Ask That – Wheelchair Users” episode last night. She did an [...]
Motherhood
After 9 long months of waiting, and as a patient with hypermobility, it was 9 months full of joy, excitement, love, but also risks, fears, what ifs, adjustments, and quick thinking (that could be [...]
SHOUT A LITTLE LOUDER: Ehlers-Danlos Awareness Month (May)
If you have Ehlers-Danlos Syndrome one of the very first things you would have done is learn how to pronounce and spell it. And it’s not something you are going to forget anytime soon: just about [...]