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 [...]
In Adults, Community, Disability Awareness, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Marfan Syndrome
Posted Hypermobility Awareness Week 2019
While the whole of May has become the month to recognise & raise awareness of The Ehlers-Danlos Syndromes (EDS), we have chosen one week, May 25th-31st to raise awareness of HYPERMOBILITY, [...]
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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 [...]
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 Disability, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, Medical Experiences
Posted Who’s got your back?
Who’s got your back? International Scoliosis Awareness Day was on June 30 with the theme #gotyourback18. I feel passionate about highlighting this awareness day because I have been [...]
A positive pain management experience
Earlier this year I was referred to the Pain Management Clinic at my local hospital, and last month I had my very first appointment with the Pain Management Consultant. The reason my doctor [...]
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 [...]