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Ehlers Danlos Syndromes

This group of thirteen genetic conditions affect the body’s connective tissues. Although grouped together under the same name (EDS), each condition is separate and distinct. They are caused by a gene mutation which may be inherited and cannot be cured. Day to day management of symptoms is often based on Exercise, Physiotherapy and Self-care. The self-care and exercise can be assisted by Soft Tissue Therapy to reduce pain and improve overall well-being.

Connective tissue is made from proteins (mainly Collagen) and lies between other parts of the body. It holds everything in its’ place, supporting structures whilst keeping them separate. In EDS the Collagen becomes fragile and stretchy which leads to a whole spectrum of symptoms and issues. Many systems of the body can be affected at once but EDS is largely an invisible disability and patients often have difficulty getting diagnosed. There are no genetic tests for EDS and diagnosis is often based on joint hypermobility (double jointed, frequent dislocations), stretchy skin, family history and long – term pain.

The most common form of EDS is the Hypermobility type although the exact prevalence of this condition is not known. These conditions are frequently mis-diagnosed as Fibromyalgia, IBS or Chronic Fatigue Syndrome as the symptoms can be similar.

The main symptoms of EDS are:

Long – term pain,

Chronic Fatigue,

Stretchy or weak skin,

Dizziness upon standing,

Palpitations and

Digestive disorders.

Anyone suffering from these symptoms should approach their G.P. to discuss possible solutions. If there is a family history of suspected or diagnosed EDS this should be mentioned so that a referral can be obtained to the correct specialist.

More information can be found at: https://www.ehlers-danlos.org and https://www.ehlers-danlos.com

If you need any help or advice about how massage can be used to improve the lives of those with chronic illness, please get in touch