An overview of some of the strategies that might help the transition from shielding into the new phase. Read more
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Thank you so much for this. I found it really useful, reminding me of some things I knew already, and teaching me new ways of helping myself as well. Read more
More #2020Hindsight! ‘Advice for life’ with hEDS to my younger self' now I’m nearly 50. (in the style of Baz Luhrmann ‘Sunscreen’) Read more
Zoe's story, she's one of our most truly rare EDS members, at the time of writing EDS Arthrochalasia cases numbered around 40, globally. Read more
When someone has a hypermobility syndrome, it isn't just their immediate family that is affected, a little removed are the uncles, aunts, and grandparents watching their children struggle to help their own children manage the condition. One such Grandparent wrote to us about his experience and concerns over his granddaughter's illness and diagnosis. Read more
Osteogenesis imperfecta is one of the better known, but less understood conditions that falls under our connective tissue disorders umbrella. As part of our 2017 #HMSAware campaign we shared this story from sunny South Africa on living with this condition. Read more
Thanks to Rachel Martin for agreeing to support the HMSA in raising awareness of Loeys-Dietz syndrome, Marfan syndrome and the potential overlap of symptoms which can confuse the diagnosis of HDCTs. Read more
Doctors, Physiotherapists, Podiatrists, Rheumatologists, Neurologists, Cardiologists we all know what it's like to feel like you're being passed from pillar to post - so what is it like when you find someone who actually 'gets it' and explains? Read more
There's more to connective tissue disorders than EDS - Marfan patients often feel aggrieved that they (and others) are left out of the hypermobility conversation which is largely dominated by Ehlers-Danlos syndrome. #HMSAware Read more
Get a good physio and keep at it. Physio is for life with HMS. Read more
You may have noticed the lack of posts from me again the past few weeks - but I was off fighting a better fight. Kids & teen related of course! 😊 Read more