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Brave Angela has had life of painful struggle Nov 23 2004




By The Huddersfield Daily Examiner


For 50 years Huddersfield woman Angela Turner has struggled to cope
with a rare genetic condition, Ehlers- Danlos Syndrome. She told KATIE
CAMPLING her story, to raise awareness about it.

AS a child, Angela Turner discovered her body was different to most
people's.

Her joints allowed her to bend her limbs and digits at extra- ordinary
angles and everyday bumps and scrapes resulted in severe cuts, bruises and
even joint dislocations.

Angela said: "I could do horrible things with my fingers! I was often
told I should join the circus and make a fortune."

But it was not until Angela was 16 that she discovered what caused her
problems.

She had rolled over in bed and her knee dislocated.

She was having it examined by an orthopaedic consultant, who thought
she had a cartilage problem.

Her referred her to a different doctor, who had seen another patient
with similar symptoms and he said Angela had Ehlers- Danlos Syndrome.

With EDS, there is a problem with collagen - which connects joints and
tissues - meaning joints become over-flexible and tissues are fragile.

This means skin tears easily and minor actions, such as rolling in
bed, can dislocate sufferers' hips, shoulders and knees.

EDS is hereditary and children suffer from the same form of EDS as
their parents - although it may be more severe.

In Angela's case, her father had mild EDS, which was undiagnosed until
she discovered she had the condition.

Only one in 250,000 people have EDS, which means many doctors have not
encountered it before.

Angela is a trustee of the EDS Support Group, a charity set up 14
years ago, to raise awareness of the condition and to offer support to
sufferers.

Angela said: "The point is to keep informing medics and other people
about the condition."

Angela's form of EDS affects every joint in her body.

There is no cure, so she has learned to cope and even manages to work
as a speech and language therapist at Holly Bank School, Mirfield.

However, it makes every aspect of her life more difficult.

She said: "You have to learn to limit your life in every way so you
don't exacerbate it.

"It's silly things, like if you have to make six phone calls a day you
can only make two, or your jaw will hurt!

"It can be difficult for people to understand because they can't tell
you've got a condition just by looking at you."

EDS has also dramatically increased wear and tear on Angela's joints.
At the age of 50 she has the skeleton of a 70-year- old.

The condition also prompted her to make the difficult decision not to
have children.

She said: "I physically couldn't cope with looking after them. Also, I
thought I could pass on EDS.

"It is a difficult question as to whether to have children if you know
they might have EDS."

She added that many parents who have children with undiagnosed EDS go
through the trauma of being accused of child abuse.

She said: "A child can simply crawl across carpet and give itself a
bad cut. So a lot of families are investigated, which is very difficult for
them.

"The EDS Support Group regularly sends information to social services
to make them aware of the condition."

The group recently received £124,000 from medical products company
GlaxoSmithKline to pay for genetic research into EDS.

It is hoped the research could pave the way for developing a cure, or
at least a test for EDS.

For further information about EDS, visit the EDS Support Group
website, www.ehlers- danlos.org

EDS is the collective name given to a group of around 10 related
genetic disorders which relate to body tissues and joints.

EDS varies in severity and can affect all or part of the body.

Some forms can be deadly, like vascular EDS, which makes blood vessels
fragile. Sufferers are in constant danger of vital blood vessels bursting.