What is Ehlers-Danlos syndrome? Man suffers from rare condition that makes the body fall apart from the inside

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Phil Clark, 39, and his three children are going through the incurable genetic condition.

Gout causes in and around joints, particularly the big toe (Reuters)

A 39-year-old father and his three children are going through an incurable genetic condition which is gradually making their bodies fall apart from the inside.

All the four individuals have a form of Ehlers-Danlos syndrome (EDS) which, according to a Daily Mail report, weakens a human’s connective tissue that supports organs and body parts, holding them in place.

Reports say that Phil Clark’s, condition is so advanced that it has weakened his ligaments in his neck which could break anytime.

Clarke, a former teacher, needs £55,000 to have an urgent and complex surgery in Spain next month. The operation will fuse Clark’s upper vertebrae together to stabilise his neck. A part of his skull would also be removed to make way for his brain that is seeping into his neck, the Daily Mail report said.

His children Owain, 13, Rhiannon, 10, and Steffan, 5, might also need the surgery in future.

Clark’s condition was diagnosed after Rhiannon began suffering from severe joint pain. Later similar symptoms appeared in her siblings as well.

“Knowing Phil and our precious children are battling against such a terrible fate is horrendous. My husband could suddenly die and won’t be here to watch his children grow up and help them cope with the same dreadful condition,” Clark’s wife Sallyann, of Birkrigg Common, near Ulverston, Cumbria, was quoted as saying.

Without the surgery, paralysis, organ failure and “internal decapitation” are likely, Sallyann added. The family needs another £23,000 to cover the cost of the operation.

EDS condition affects around one in 5,000 people to different degrees of severity and is said to be hereditary.

Also know as EDS, elastic skin, the Ehlers-Danlos syndromes are a group of connective tissue disorders that mostly affect the skin, joints and blood vessels. These are mostly inherited disorders and can vary both in how they affect the body and in their genetic causes.

Symptoms of this condition may include joint hypermobility, which is loose/unstable joints that are prone to frequent dislocations; joint pain and hyperextensible joints where joints move beyond their normal range.

It can also affect the skin. A patient can see that their skin has become so fragile that it tears or bruises easily. There can be severe scarring, slow and poor wound healing and many more, The Ehlers-Danlos Society website stats.

There are thirteen defined types of EDS and the major types of Ehlers-Danlos syndrome are classified according to the signs and symptoms of the patient.

Each type of EDS is a distinct disorder that “runs true” in a family, the website reported.

In Vascular Ehlers-Danlos syndrome, life expectancy can be shortened due to the possibility of organ and vessel rupture, the website reported.

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