*Disclosure- this post is just an overview to raise awareness for
Ehlers-Danlos Syndrome and should not be taken as medical advice*
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)
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.
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