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Raising awareness of a tissue disorder

IF I were to stand in any high street and ask 100 people at random whether they had heard of Ehlers-Danlos Syndrome, my question would be met with blank stares and mutterings of “Ihaven’t heard of that one before”. Until a few months ago my response would have been exactly the same. It was only when I learned that a friend of mine has the condition that I began to find out about it. Ehlers-Danlos Syndrome (EDS) is a degenerative connective tissue disorder, which can be life-limiting, caused by collagen deficiency. The condition has been classified into different types and problems associated with EDS are fragile, hyper-extensible skin that may break easily and heals less well with wide scars; Lax, hypermobile joints that dislocate very easily and may develop early degenerative osteoarthritis; chronic pain in joints and limbs; teeth that may be carious; heart irregularities; skeletal deformities such as curvature of the spine and fiat feet; arteries may rupture in some types; IBS-like symptoms may occur; problems with bladder, possible urgency and incontinency, retention and repeated infections and Postural Orthostatc Tachycardia Syndrome (POTS) which increases the heart rate and lowers blood pressure. Other symptoms could be brain fog, chronic fatigue and fibromyalgia.

EDS can affect men and women of any race or ethnic group. The exact incidence of EDS is unknown. However, medical literature suggests that one in 5,000 may have EDS and it may be even more prevalent. Commoner forms of joint laxity affect 10 per cent of people. EDS is virtually unknown to the general public and can be misdiagnosed by the medical profession – sometimes bruising of fragile and delicate skin is mistaken for a symptom of child abuse. Ehlers-Danlos Support UK, the support organisation for sufferers, Is committed to raising public awareness and to fundraise to finance research into this distressing condition. EDS UK’s slogan ‘Making our invisible visible” reflects that to the outsider symptoms may not be obvious While the sufferer is in all probability in pain. Flare-ups of the condition are commonplace. When these occur, they create excruciating pain, great distress, severe discomfort and debility. It is often the case that someone with the condition can walk normally one day may need crutches at some point and may have to resort to using a wheelchair from time to time.

Throughout the year, EDS sufferers, their families, friends and carers involve themselves in fundraising activities, some of which are very challenging. May 2014 has been designated EDS Awareness Month, and determined efforts will be made to increase public awareness. An awareness and information open day is to be held ki the outpatients department of Kent and Canterbury Hospital on Wednesday, May 7, from around 10am. There will be literature available and it will be possible to speak to one or two people with personal experience of Ehlers-Danlos Syndrome.

John Rose

Herne Bay Times, April 24th 2014

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