Hypermobility Lecture Series
Switching on the Lightbulb to see Hypermobility Disorders This blog has been written to give both clinicians and people living with hypermobility and associated conditions, (EDS/HSD) the [...]
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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!
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The Power of a Diagnosis
*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 [...]
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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 [...]
Marfan Syndrome: It can be a pain in the behind
February is Marfan Syndrome Awareness month. Our resident Marfan Syndrome blogger, Lucy, has this extremely important message to share: Marfan Syndrome can be a real pain in the butt – [...]
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 [...]
A lifetime of missed opportunities
It is clearer now, more than ever, that people like Hallie, are having the trajectory of their lives determined by the missed opportunities of doctors to make an educated diagnosis of [...]
In Chronic Illness, Disability, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Independence, Joint Hypermobility Syndrome, Thought Management, Understanding
Posted When the pieces finally fit: Hypermobile-EDS
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 [...]
In Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Management Skills, Marfan Syndrome, Pain Management, Therapy Options
Posted Finding your way to keep moving forward with Hypermobility
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 [...]
In Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Management Skills, Marfan Syndrome, Pain Management, POTS, Therapy Options
Posted Therapy Spotlight: Paediatric Physio
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 [...]