Back in May, I sent this email to friends and colleagues to increase awareness of Ehlers Danlos Syndrome and also to try and help them understand what it is I have.
First let me start by saying I don’t normally do this kind of thing… But May is EDS awareness month and given that you are probably wondering what on earth EDS is, I am going to make an exception.
Secondly, at no point will you need to dig in your pockets or navigate sticky sweet wrappers in the bottom of your bag in a search for loose change. I am concerned with raising awareness not money.
You can ignore this, read it and/or ask me questions as you’d prefer.
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.
Without wanting to freak anyone out, 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. More recently I have had to reduce my hours because of it and I now have carers coming in twice a day, every day to support me with things I used to take for granted.
Why should you care?
I’m not telling you this because I want pity. Whether you care or not about my particular circumstances is entirely optional, but I want to raise awareness of EDS for a couple of reasons. Firstly, it is a highly under diagnosed condition. To get to where I am I had to go through being dismissed as exaggerating, being a hypochondriac and being told the pain was just growing pains. Given that I’m only five foot, perhaps growing pains would have been helpful! Anyway, the more people are aware of it, the more people can get a correct diagnosis.
The second reason I want to raise awareness is to get more people talking about disability and hopefully increase confidence about what to say or do around someone with a disability. I think there is still a lot of confusion about what to say or do and fear about getting it wrong. From my perspective the key is to treat people the same as you always would; hold the door open, talk to me and not the person pushing my wheelchair, if you don’t know me don’t open a conversation by asking about my health. You wouldn’t ask a stranger about their cancer, so don’t ask a stranger about their splints. It’s generally well meaning but it reduces someone to a disability. And if you don’t know me, definitely do not congratulate me on working. This did happen a few weeks ago. The woman was probably meaning well but I don’t need congratulations for working, if you want to congratulate me about something, go for making it to Cambodia and back on my own.
As I said, I don’t want pity. I want people to try and understand. And be thoughtful. And talk to me. Not sure if I can do something or if I need help? Ask me. I honestly don’t mind people asking provided it is done considerately and not out of nosiness.
As an aside, it can be hard to talk about your own disability. There can be a grieving process which comes from not being able to do things, live the life you expected and it can be a hugely emotional process. If you’d tried asking me about my pain four years ago, I would have fallen to pieces and been trying to hold back tears. I wasn’t ready to talk about it.
A happy ending…
Despite all of this, i am lucky enough to be surrounded with some amazing people. A lot of whom are at work. It’s things like the endless cups of coffee when I can never offer one in return, checking a bar has a downstairs toilet before we go out, putting up with my frequent “can you just write…” requests, being flexible when my taxi doesn’t turn up in the morning…. which mean I can make it through the day. All done without comment, questions or pity. My friends are also endlessly supportive, making meals for my freezer, making my bed, listening to me and much more.
Thank you for taking the time to read this. If you have any questions, please do feel free to ask. There is more information about EDS at http://www.ehlers-danlos.org/about-eds/