EDS and Me: A Personal Account and Hints and Tips to Managing Ehlers Danlos Syndrome
May has been Ehlers Danlos Syndrome Awareness Month. This past month the charity Ehlers-Danlos Support UK has been running the campaign #EnoughIsEnough; diagnosis and management of this condition in the UK has been chronically neglected and the charity is calling on the government o fund suitable NHS programmes in education and support. As someone with EDS myself, this cause is extremely important to me, as I know how difficult it is finding the right help and support with this illness.
What is EDS?
Some of you may be wondering, what is Ehlers Danlos Syndrome (EDS)? This is a fair question. It's a rare genetic condition and most people haven't heard of it.
Simply put, EDS is a genetic condition that affects connective tissue in a person's body.
There are 13 subtypes of EDS, each presenting slightly differently. But what links them all is the body's inability to properly produce healthy connective tissue.
Connective tissue is found throughout the entire body. It is the tissue that supports, protects, and gives structure to other tissues, structures and organs of the body. There are three types of connective tissue.
- Collagen Fibres: mostly Type 1 collagen, the most abundant protein in the body.
- Elastic Fibres: contain elastic and fibrillin
- Reticular Fibres: contain type 3 collagen
The types of connective tissue affected depends on the type of EDS.
Though there are different types of EDS, they all share a number of symptoms.
- Joint hypermobility (loose and unstable joints that may dislocate or sublux easily)
- Joint and muscle pain
- Delicate skin that breaks and bruises easily, and heels slowly
- Digestive problems
So what about me?
My name is Ella. I’m a writer and soon to be published author and I work in publicity for Living Made Easy by DLF.
As a kid I was always active. I was the kind of child who ran around in the garden in bare feet and clambered up every tree I could find.
I was born healthy, early and very small, but by all appearances healthy. The first sign that anything was different was when my mum went back to college to study sports massage therapy. She had to do a study of someone’s gait and posture, ie. how they walk and how they stand. She noted my very hyperextended knees, hips and lumbar curve, and how my ankles rolled when I walked. I couldn’t have been older than seven or eight.
This was quickly forgotten. As far as I was concerned it didn’t really impact my daily life. When I was ten I started snowboarding. I adored it, but it would make my knees and calves ache so much that by the end of the day they’d be in severe pain. This is when I noticed it really start to get bad. I’d be in pain every time I did PE at school or every time I went for a dog walk. And sometimes the pain had no cause. It would just strike in the middle of the night for no reason, bad enough to bring me to tears. But the excruciating pain, back problems, skin problems and more were all simply attributed to growing pains, to being a teenager and other easily explainable things. I resolved to simply pull my socks up and deal with it so to speak.
It wasn’t until university that I started having much testing done. Prior to this I’d had a small amount of physio for my back but that was about it. 3 years of testing for everything from Lupus to Type 1 Diabetes took place before I finally went to see a rheumatologist. He diagnosed me with hypermobile EDS. I finally had my answer. It had taken almost 15 years and I’d been made to feel like a hypochondriac but I had an answer. This made sense of all of the problems I’d never realised were linked. This meant I could finally get help and support right? Sadly not.
Why the lack of official support?
Most types of EDS are classed as ‘rare’ or ‘ultra rare’. These are scientific and governmental labels that help to dictate how the NHS should manage them, and what funding is allocated to research treatment and support. However, HSD (hypermobile spectrum disorder) and hEDS (hypermobile Ehlers Danlos Dyndrome) are thought to be more common than this, up to 5 times more common in fact.
Whilst some types of EDS benefit from the resources put in place by the government and healthcare bodies for these types of conditions, many don’t, as they are not considered rare enough to qualify for this kind of support, but too rare to be of major concern when they could be focusing on conditions that affect more people.
The Ehlers Danlos Society UK believes that EDS and HSD “are two fo the most misunderstood conditions of our time.” They are calling on the government to provide more care, resources, and support for those with all types of EDS to better support our community.
My Hints and Tips
So, if there are precious few resources out there, where can people find support?
The best answer to this is within the community itself.
When I was diagnosed I was basically told that the most any doctor would do for me was provide me a script for more powerful pain killers if I wanted them. Other than that, I was told I’d likely be in a wheelchair before I was thirty, but that the NHS probably wouldn’t provide me with one as I’m ambulatory. (And would you look at that, I’m twenty seven and researching wheelchair purchases)
With this in mind I want to share things that I have found useful in managing the condition, though this is purely based on personal experience.
Pain is without a doubt one of my biggest symptoms. It is with me every single day and whilst the fatigue that I get is crippling, for me I believe that it in large part comes from the chronic pain. Being in pain all the time is exhausting.
Yes we can manage it with over the counter pain meds but for the sake of my kidneys (especially as someone who’s already had a kidney stone) I don’t want to be constantly taking them.
I’ve found that heat works remarkably well when treating pain. Whether it’s a hot bath, using an electric heat blanket/ cushions, or simply a hot water bottle, I can often be found with heat applied to my limbs to soothe the pain.
Supportive joint braces are also good for reducing pain after a dislocation or another injury, as well as sports tape for slightly less serious injuries. These help you to keep the joint in place as it heals and makes you more aware of the joint placement.
Mobility is a difficulty for me as walking causes a lot of pain for me in my back, hips and knees, not to mention the rolling ankles.
A wheelchair makes all the difference when out and about. I tend to use a manual wheelchair, borrowing one when I go out to places like museums, galleries or shopping etc. The manual wheelchair gives me the independence to push myself around whilst preventing pain and exhaustion.
Many people also use an electric wheelchair. For some with EDS using a manual wheelchair still creates fatigue, and risk of dislocation or subluxation in the shoulders and elbows, so they use a power-chair instead.
I also have a walking stick, and crutches, both of which are foldable which gives me the great opportunity to take them out and about with me for if and when I need them. I can fold them up, put them in a bag, and get them out when I need them. They take pressure off my joints, and in general make me more aware of how I’m walking.
Postural Orthostatic Tachycardia Syndrome (POTS) Symptoms
One of the symptoms of EDS that I experience is POTS. Because my body is bad at regulating my autonomic nervous system, I often get dizzy, short of breath, and heart palpitations. This happens when I stand for too long, when I take a shower because of the heat, even when the day is too hot. Having a water bottlewith me or a travel mug that keeps water cold particularly helps to make me feel less dizzy after a shower.
Shower stools, perching stool and portable seats all also help, as you can perch or sit down when starting to feel dizzy.
My blue badge is a life saver. I use it every day. Having the blue badge in the car means that I don’t have to walk three flights of stairs in a multi-story car park which kills my knees before my day has even begun. It also means that when I eventually get my wheelchair I’ll actually have enough space to get it out of the boot.
The sunflower lanyard is a universal sign for invisible disabilities. It’s a card and lanyard that you can buy that lets others know that you have a disability, and that you may need people to be aware of this. You can personalise is so that it has symbols on it representing some of the struggles you have. It also lets people know that despite “looking normal” you may need a disabled seat on a train for example.
Radar Bathroom Key
These keys can be used to unlock disabled bathrooms around the country. The key is not region specific and can be used to open any locked disabled loos so that if there is a sudden need, you don’t have to worry. This is indispensable for someone with EDS as IBS often comes hand in hand with the disease.