WHAT IS EDS? 

EDS stands for The Ehlers-Danlos Syndromes

​​The Ehlers-Danlos syndromes (EDS) are a group of thirteen individual genetic conditions, all of which affect the body’s connective tissue. Connective tissue lies between other tissues and organs, keeping these separate whilst connecting them, holding everything in place and providing support, like the mortar between bricks. In EDS, a gene mutation causes a certain kind of connective tissue – the kind will depend on the type of EDS but usually a form of collagen – to be fragile and stretchy. This stretchiness can sometimes be seen in the skin of someone with EDS; individuals with the condition may also be able to extend their joints further than is usual – this is known as being hypermobile, bendy or double-jointed. As collagen is present throughout the body, people with EDS tend to experience a broad range of symptoms, most of them less visible than the skin and joint differences. These are complex syndromes affecting many systems of the body at once, despite this EDS is often an invisible disability. Symptoms commonly include, but are not limited to, long-term pain, chronic fatigue, dizziness, palpitations and digestive disorders. Such problems and their severity vary considerably from person to person, even in the same type of EDS and within the same family. 

Conditions linked to EDS

Many other conditions appear to commonly occur alongside the Ehlers-Danlos syndromes.

These include:

  • Neurological and spinal problems
  • Joint problems
  • Malfunctioning of the autonomic (involuntary) nervous system (POTS)
  • Digestive disorders
  • Cardiovascular problems
  • Skin 
  • Bladder problems
  • Dental, oral and voice problems
  • Mental health
  • Mast cell activation disorder
  • Chronic Fatigue 
  • Anxiety
  • Sleep Disorders
    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. 

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