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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 [...]
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 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 [...]
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, [...]
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 [...]
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 [...]
We have all had bruises that we can’t recall the origin of, we’re Hypermobile! Maybe a scar or two that we just don’t remember the story behind. But what happens when the [...]
If you’re living with a chronic condition like Marfan Syndrome, Ehlers-Danlos Syndrome or any hypermobility condition, and you’re anything like me, you’ll spend most of your [...]
Living with tubes connected to or coming out of your body is a very different kind of lifestyle. It can be frustrating, and scary, and at times a little gross. It can also be rewarding, and [...]
If you’ve been living with anxiety for a while, chances are you know whether a day like Christmas day will phase you. If you think it will, you might need some of my 5 tips for managing Christmas [...]
Following on from last weeks post about What we need at Christmas, we recognise that it’s extremely difficult for people to understand what it feels like to have a hypermobility condition, [...]