Other sources of help

Here are some other organisations which you may find useful:

PoTS UK (https://www.potsuk.org/) Providing information and support about postural orthostatic tachycardia syndrome (PoTS) for sufferers, medical professionals, family, and friends

Pain Concern (http://painconcern.org.uk/) Work to improve the lives of people living with pain and those who care for them.

Ehlers-Danlos Support UK (https://www.ehlers-danlos.org/)

Brittle Bone Society (https://brittlebone.org/) supports people with Osteogenesis imperfecta

Stickler syndrome UK (https://stickler.org.uk/) is a non-profit organisation that provides information for families, healthcare and medical professionals affected by or caring for people with Stickler Syndrome.

The Arthritis and Musculoskeletal Alliance (ARMA) (http://arma.uk.net/) is the umbrella body for the arthritis and musculoskeletal community in the UK.

Pain UK (https://painuk.org/) an alliance of charities providing support and help for those living with pain. Pain management, healthcare advice. tips and resources available.

The Ehlers-Danlos Society (https://www.ehlers-danlos.com/) Formerly the EDNF, support collaborative research and education initiatives, awareness campaigns, advocacy, community-building, and care for the EDS and HSD population. They're developing a Global Registry of patients with EDS or HSD

Latest

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.
HMSAware - Getting physical when fully flopped HMSActive

A fully flopped Hannah gets her wriggle on, and an #HMSActive series of videos from our Exercise and Rehab adviser Catherine, there's almost always something you can do, however small - but keep moving #HMSAware
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.
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.

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.
"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
HSD: Diagnostic Criteria

The diagnostic criteria for hypermobility spectrum disorder (HSD)
What is the Beighton Score?

A brief summary of the beighton scale, it's uses and limitations.
HSD: Symptoms

A short overview of common symptoms of hypermobility spectrum disorder
Hormones and Hypermobility

How various hormones interact with hypermobility, including why symptoms may worsen around menstruation and things to consider regarding hormonal contraceptives.
Hypermobility Disorders: An Update for Clinicians

An overview of hypermobility disorders, their recognition, significance, and management.
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! 😊
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