Fundraiser for HMSA Hypermobility Syndrome/EDS

Hi all,

I am partaking in Tough Mudder this year to fundraise for the Hypermobility Syndromes Association; to help progress further research into HSD, JHS, hEDS, as well as helping provide support and care for those, such as myself, living with these conditions.

Hypermobility can be as simple has regularly dislocating one joint, to being completely debilitated and in a wheelchair. A hypermobile joint can bend beyond the typical range of movement, often causing subluxations or dislocations and acute to chronic pain. You can be completely asymptomatic, or have a type of Hypermobility that is a part of the Ehlers Danlos family; causing multiple internal problems such as bladder/bowel problems, heart problems, stomach/digestive problems and so on.

I consider myself extremely lucky. Unusually I was diagnosed with Hypermobility at a very young age and remain 9/9 on the Beighton joint scale today (how flexible you are). My condition affects every joint in my body and I began suffering with chronic pain as a child. I have learnt a lot about my condition since initial diagnosis at age 8 and how best to manage my symptoms and various problems over the years. After years of physiotherapy, hydrotherapy and being apart of a study as a teenager, I feel fortunate I am still walking, lifting weights and able to partake in Tough Mudder. As a child I was told many things about my future which scared me and over the years my pain got worse. However, in the past couple years with the right people around me, taking care of and listening to my body, I can safely say it's improved for the first time. I will no doubt have a flare up at some point in the future, but I have never had such little pain in the last year. I want to tell people like me that this condition is manageable and when it gets tough, you're tired and in a lot of pain; it gets better.

Common symptoms can include:

Joint instability and hyper-extension, sprains, strains, subluxations, and/or dislocations

Stomach and digestive problems (like reflux and slow stomach emptying)

Poor proprioception

Bladder and bowel problems

Autonomic dysfunction including postural tachycardia syndrome (e.g. dizziness, fainting)

Easy bruising

Poor wound healing

Long term (persistent) pain

Stretchy/thin or soft skin

Chronic fatigue

What causes joint hypermobility syndrome?

The exact cause of joint hypermobility syndrome isn’t known. However, the disorder tends to run in families. The genes that are involved in the creation of collagen are believed to play a role. Collagen is the protein that adds flexibility and strength to your joints, ligaments and tendons. People with joint hypermobility syndrome have loose joints because they have weak ligaments. They have weak ligaments because of the defect in their collagen.