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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, [...]
Because it could change a life: Marfan Syndrome
Marfan Syndrome awareness month is upon us again! If you’ve followed my blogs in the past, you’re probably thinking “here we go again; she’s talking about Marfan Syndrome AGAIN” however [...]
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 [...]