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  • Home
    • About
    • Blogging Team
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  • About Hypermobility
    • The Spectrum of Hypermobility
    • Hypermobile Ehlers-Danlos Syndrome
    • HSD, JHS, hEDS… oh my!
    • Links
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All of our Blogs!

Monthly Archive for: "February, 2019"
February 2019
Rare Diseases: What type of Zebra am I?
By Michelle O'Sullivan (Occ. Therapist)
In Disability Awareness, Ehlers-Danlos Syndrome, Mindfulness
Posted February 25, 2019

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
By Michelle O'Sullivan (Occ. Therapist)
In Disability Awareness, Ehlers-Danlos Syndrome, Marfan Syndrome, Understanding
Posted February 25, 2019

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 [...]

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Rare Diseases: Kyphoscoliotic Ehlers-Danlos Syndrome
By Michelle O'Sullivan (Occ. Therapist)
In Disability Awareness, Ehlers-Danlos Syndrome
Posted February 25, 2019

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, [...]

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Because it could change a life: Marfan Syndrome
By Lucy Atkinson
In Disability Awareness, Marfan Syndrome
Posted February 20, 2019

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 [...]

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You, me & my connective tissues
By Guest Blogger
In Adapting, Carers, Disability, Ehlers-Danlos Syndrome, Emotional Impacts, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, Self-Care
Posted February 13, 2019

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 [...]

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