What is EDS and why do I care?
Ehlers Danlos syndrome, or EDS, is a heredity condition affecting collagen. It also goes by the name Hypermobility Syndrome and various permutations of either of these. The fact that it’s name is complicated is fitting, the condition itself is also very complicated. Different people can be affected completely differently and there are different types of EDS.
Collagen is essentially the thing that holds you together. It acts as a “glue” in the body, adding strength and elasticity. The four most common types of EDS include:
- hypermobile EDS
- classical EDS
- vascular EDS
- kyphoscoliotic EDS
All share common features, such as loose and flexible (hypermobile) joints, abnormal skin, and other fragile body tissues e.g., weak abdominal wall leading to hernias, stretchy blood vessels and varicose veins, and thin heart valves. Most people with a type of EDS will also experience fatigue.
People with hypermobile EDS may have:
- joint hypermobility – the joints have a wider range of movement than usual
- loose, unstable joints that can lead to dislocations and subluxations (incomplete or partial dislocation of a joint)
- joint pain and fatigue
- joints that “click”
- easily bruised
- gastrointestinal complications
- symptoms that affect the autonomic nervous system (the nervous system that controls your automatic functions, such as breathing and urination) – this includes postural tachycardia syndrome, which causes fast heart rate, dizziness and fainting
- mitral valve prolapse – a heart valve abnormality
- uterine, rectal or bladder prolapse
- urinary dysfunction
- dental problems
- slow bone density (osteoporosis)
And the reason I care about EDS, in particular the hypermobility type, is because I have it. Both me and my sister have inherited the condition.
How it affects me
EDS affects different people in different ways and to different degrees of severity. For me, my toes and fingers dislocate daily, my other joints such as shoulders, hips and rips, fully and partially dislocate less frequently but still fairly regularly. Yes, it turns out ribs can indeed dislocate, who knew?! There is also the constant pain and fatigue. Pain and weakness make my hands very difficult to use and I can’t walk very far or stand for very long. I take high levels of painkillers on a daily basis.
I have had to retire due to ill health and I have carers coming in twice a day, every day to support me with things I used to take for granted.
If you’ve come across this page because you have, or think you have, EDS, then you might find the following posts useful but obviously they are not to be used as medical advice! In fact they are of little help if you’re looking for medical info, they’re more about living with EDS.
- A day in the life of me and EDS 2015 and 2016 – I’m not an expert, I’m a person living with EDS/HMS and my experiences will be different to other people’s but hopefully it’ll give you some sense of what having the condition means. I’d also like to reassure people with EDS that it’s unusual to deteriorate quick as quickly as I have.
- Eating and drinking with EDS – because not everything is as straightforward as it seems… see spilt drinks, being unable to hold a fork etc etc…
- Stuff which makes my days a bit better – for me, this includes twitter and my friends (any kind of chronic illness seems to be a great barometer for figuring out who your true friends are)
- Travelling with EDS – it is still possible to do things like travelling, they just require more planning and depending on how HMS/EDS affect you, they may require more support. This post was written when I was using crutches and still able to dress myself.
- Having carers
Other useful links: