what is Ehlers-danlos syndrome (EDS)
EDS
Ehlers-Danlos syndrome (EDS) is a disease that weakens the connective tissues of your body. These are things like tendons and ligaments that hold parts of your body together. EDS can make your joints loose and your skin thin and easily bruised. It also can weaken blood vessels and organs.
There's no cure for EDS, but the symptoms can often be treated and managed. Being properly diagnosed can take years, decades and finding doctors that believe and support your journey can be challenging.
Many other conditions appear to commonly occur alongside the Ehlers-Danlos syndromes, particularly together with hypermobile EDS (hEDS) or the hypermobility spectrum disorders (HSD). Although an association has been demonstrated between hEDS/HSD and most of these problems, there is not yet enough scientific evidence to prove that one issue causes the other; this relationship is one that we may not understand until we find the gene or genes causing hEDS and HSD.
Among the ‘comorbidities’ that might present themselves along with hEDS/HSD are:
- Malfunctioning of the autonomic (involuntary) nervous system (PoTS)
- Gut dysmotility (an abnormality of the involuntary muscle movements that control digestion, which may cause the system to be very sluggish)
- Chronic fatigue
- Small fibre neuropathy (nerve damage causing pain which can be severe, pins and needles, numbness)
- Cervico-cranial instability (complex problems caused by joint instability at the top of the neck)
- Sleep disorders
- Anxiety
This is not an exhaustive list. It is important to note that not everyone with hEDS/HSD will have all or any of these problems, but they are possible. This section provides information and management advice on living with the comorbidities.
what is Ehlers-danlos syndrome (EDS)
Why the Zebra?
In medicine, the term "zebra" is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually the best, so as to not go around diagnosing patients with exotic diseases that are highly unlikely. Common diseases are what doctors are expected to encounter. But doctors seem to forget that "zebras" exist, and so getting a diagnosis and getting treatment can be more difficult for sufferers of rare diseases. Ehlers-Danlos Syndrome is considered a rare disease, and so EDS sufferers are the medical zebras.
Thank you for taking the time to learn a little about EDS.