Coronavirus Shielding: Advice for rejoining the world

An overview of some of the strategies that might help the transition from shielding into the new phase. Read more

Real life stories

Coronavirus Shielding: Advice for rejoining the world

An overview of some of the strategies that might help the transition from shielding into the new phase. Read more

How do you get through mundane tasks? By Sophie Harvey

How the HMSA's Webinars have helped me

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

‘Advice for life’ with hEDS #2020Hindsight

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

HMSAware - Rare Disease Day 2020, Zoe's story, Arthrochalasia

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

HMSAware - One Step Removed - A Grandparent's View

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

HMSAware - Osteogenesis imperfecta - More than just brittle bones!

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

HMSAware - Loeys-Dietz and differential diagnosis

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

HMSAware - My One True Medic

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

HMSAware - Marfan syndrome, EDS is not the only 'fruit' of the hypermobility family tree

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

HMSAware - Exercise, stay #HMSActive

Get a good physio and keep at it. Physio is for life with HMS. Read more

Latest

Rachel King (Trustee)
Communicating about hidden disabilities and symptoms (Webinar) April 2021

A 1 hour webinar on "Communicating about hidden disabilities and symptoms" with Hannah Ensor, exploring effective ways to improve communication with, and help gain understanding from, family and loved ones (who we may all be spending a LOT more time with for the immediate future!)
Help me change the lives of hypermobile people!

Covid 19 changed all our plans in 2020, for me it meant I couldn't do my last large challenge. I have come up with a new challenge that fits around family restraints and is Covid proof.
2021 HypnOT Episode 5 - Weight management

Start 2021 as you mean to go on... #HypnOT - a series of five live broadcasts introducing, or gently reminding our members about some of the strategies and skills we can all use to help manage our condition.

Response to BSR statement March 4th 2020

We are aware of the BSR statement and have prepared a response detailing our position on the subject.
"New study confirms systemic nature of hypermobility syndromes, that late diagnosis is common and associated with negative health outcomes."

This long awaited and eagerly anticipated paper has been published today on BMJ Open. Authors of this study are Joanne C Demmler, Mark D Atkinson, Emma J Reinhold, Ernest Choy, Ronan A Lyons, Sinead T Brophy.
HMSAware - Marfan syndrome, EDS is not the only 'fruit' of the hypermobility family tree

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
Hypermobility Syndromes Association COVID19 collated resources, regularly updated.

Reliable and credible information on Coronavirus for people with hypermobility related health issues, a collation of solid advice from International, European and UK organisations dealing with associated conditions.
What are hypermobility syndromes?

Hypermobility syndromes is an umbrella term for a number of complex heritable disorders of the connective tissue (HDCTs) which feature among a diverse constellation of symptoms, some hypermobility in some or all of the musculoskeletal system.
HMSAware - HMSAnonQ, FAQ and the big question...

During the 2018 HMSAware campaign we took questions from the public and formulated them into an FAQ, with an Anonymous Question on the Wednesday evening, taking a look at that perennial question of whether or not hypermobility related health problems are rare. It is reproduced below, with an update taking into account more recent UK based research.
Victory for Kids and Teens Social Media Volunteer!

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! 😊
The HMSA is to become a Charitable Incorporated Organisation
How do you get through mundane tasks? By Sophie Harvey
Explaining an HMS to friends and family

A sample letter outlining life with a hypermobility syndrome to help loved ones understand. Written by Kirsty Turner