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Double Zebra
Rare diseases are highlighted on Rare Disease Day each year. This year we featured Nail Patella Syndrome combined with Hypermobility Spectrum Disorder!
Rare diseases are highlighted on Rare Disease Day each year. This year we featured Nail Patella Syndrome combined with Hypermobility Spectrum Disorder!
*Trigger warning: mentions adverse mental health effects of medication/suicidal ideation* In the lead up to Hypermobility Awareness Week, asked Sarah from Western Australia about her experience [...]
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 [...]
Sometimes I look back over my life, and I am thankful that I was born in the modern era. Ehlers-Danlos Syndrome runs in families. Considering all the trouble we have in 2019, to get the correct [...]
Hypermobile Ehlers-Danlos Syndrome a genetic condition, it is in our DNA, and it’s NOT CURABLE! I have written that in capitals because it’s a concept that’s hard to grasp. Take [...]
We are doing a series on different therapies over the next few months, and are interviewing some therapists who have experience working with hypermobility conditions. To kick us off, we have [...]
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, [...]
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 [...]
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 [...]
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 [...]