Ehlers-Danlos Syndrome is connective tissue disorder caused by a problem in making or using one of the types of collagen. Collagen provides strength and elasticity to tissue within the body and can affect all different parts the of body.
Symptoms
The most common symptom is joint hypermobility which causes joints to be unstable which are prone to frequent dislocations, subluxations and pain. It can also cause problems with the skin such as hyper-extensibility and fragile skin that can cause bruising quite easily.
Other symptoms can include debilitating fatigue, brain fog, gastrointestinal dysfunction such as nausea/vomiting. There are also secondary conditions that are very common such as POTS (postural orthostatic tachycardia Syndrome) which causes a fast heart rate, dizziness and fainting.
The symptoms listed above are not the only ones exclusive to the condition. There are many others, but the ones that are highlighted are the symptoms that I suffer with the most.
Diagnosis
Now this is a tricky one...
For some types of EDS, there is a genetic test that can be used to diagnose it. However, with EDS type 3 (hypermobility type) the process of diagnosis is through elimination of other conditions and using the “Beighton Score” to asses the flexibility of the joints. The higher the score, the more hypermobile you are.
Now the score itself doesn’t reflect the how bad the condition can be. For example, someone with a low score such as 1, can be severely disabled. Or someone can score 9/9 and not have EDS!
(Taken from EDS UK)In my case, I scored 7/9. The only place that isn’t classed as “hypermobile” is my elbows!
Treatment
Unfortunately, there is nothing that can be given to treat or cure this condition, and it is simply a case of learning how to manage the symptoms. Painkillers are usually prescribed, along with physiotherapy and other forms of therapy such as CBT. Many people rely on mobility aids, such as wheelchairs, crutches, braces, sticks. As the condition varies, you may see someone walking fine or with crutches one day, and be in a wheelchair the next. THIS DOES NOT MEAN THEY ARE FAKING.
I am currently working full time, and have done for the last 4 months. But even I have to use a wheelchair when there is a lot of walking involved!
Progression
Although it hasn’t been scientifically confirmed, it is believed that EDS does get worse as you get older. It’s very common to have flare ups, or periods where you can feel particularly unwell.
There is such a lack of knowledge and awareness, it is just a battle to be diagnosed in the first place! Currently there are no specialists in my area, and I’ve now been told there’s no point in me being seen by anyone as there’s nothing that can be done. It’s so awful that our NHS services are so stretched that it has come down to this. However, I am determined to make a difference within the EDS community. I want to continue to raise awareness, and campaign for change. No one should have to suffer in the way that people with EDS do.
And this is only the start....😉
Sophie
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