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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 [...]
Christmas Day: It is forever full of surprises
Christmas Day is forever full of surprises. When you’re little, it’s the right kind of surprises – “What has Santa brought?” “What presents will I get from family?” “How much fun are we going to [...]
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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 [...]
Building each other up: Why we need community
Over the years I have been involved in a wide range of communities, from school to university, Guiding/Scouting Movements, church, and sports (ha, that was a while ago!). And while they all [...]
When Modern Feminism Isn’t Inclusive of Disability
I’m going to be contentious here. I have a problem with the modern feminism movement. I am a feminist; wholeheartedly and unashamedly. But part of being a feminist is holding both yourself and [...]
In Adults, Chronic Illness, Disability Awareness, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, Pain Management
Posted Top 10 most challenging symptoms of hypermobility conditions
I recently did a survey of our online community about their biggest struggles relating to living with their hypermobility condition. These people have a variety of diagnoses including Generalised [...]
In Adults, Ehlers-Danlos Syndrome, Hypermobility Information, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome
Posted The Burger Joint
Ever been to a burger joint? Ever hear of joint hypermobility? What on earth do the two have in common? Joint hypermobility is the presence of a larger than expected range of movement at a given [...]
In Adapting, Chronic Illness, Disability, Emotional Impacts, Grief, Identity, Independence, Mental Health, Pacing
Posted Hypermobility: The condition that takes away…
Hypermobility is a stealer. It steals so much from those who live with it, making it feel like the label should more appropriately be “Hypermobility: The condition that takes away more than [...]
In Adapting, Adults, Disability, Emotional Impacts, Mindfulness, Pacing, Pain Management, Psychology & Counselling, Therapy Options
Posted 4 keys to hypermobility pain management
I’m sorry to hear that you, or your child, are experiencing so much pain. Pain is a big problem for a lot of people with hypermobility conditions, so please know that you are not alone in this [...]