Sexual HealthDystonia: Isolated Through Ignorance
A survey among Britain"s 40,000 sufferers from dystonia - a
serious neurological movement disorder causing painful muscle spasms - has
shown a widespread ignorance about their condition among healthcare
professionals and a lack of understanding amongst the public.
The Dystonia Society has revealed that 74% of members who
responded were either "very worried" or "concerned" by the lack of awareness
amongst medics. "The next area of concern among our members (64%) was an
alarming lack of understanding shown by the general public," said Philip
Eckstein, Chief Executive of the Dystonia Society.
"It"s is shocking that a condition that affects so many people
can be so little understood and poorly recognised by healthcare professionals
on the frontline. This combined with the lack of understanding amongst the
public only exacerbates the pain and difficulties of living with dystonia.
People are left to struggle for years, often without even a diagnosis. And
when it has been diagnosed, they can rarely find a medical professional who
is well-informed about the condition. As for treatment - which consists of
injections of botulinum toxin to counter painful muscle spasms - it is patchy
across the whole country."
Labour MP and former Minister for Disabled People, the Rt Hon
Anne McGuire, has today agreed to table an adjournment debate in Parliament
as a matter of urgency in order to seek a response from the Department of
Health as to how this movement disorder can be better addressed by the
medical service, especially in the "front line service" of primary care.
Lord Macdonald of Tradeston, a patron of the Dystonia Society,
said: "It is gratifying to see that awareness amongst general medical
professionals has clearly grown significantly over the past decade. However
for those suffering spasms of pain due to their dystonia, any delay in
diagnosis and treatment is an ordeal. Members of the Society will be very
heartened to know that the prospect of an Adjournment Debate and new
engagement with the heath providers will improve the position for the 40,000
with dystonia".
Dr Tom Warner, Royal Free Hospital and Medical Adviser to the
Dystonia Society, said: "Dystonia is a common neurological movement disorder
and yet it is often unrecognised by healthcare professionals as well as the
general public. The involuntary muscle spasms can be very debilitating,
painful as well as embarrassing and stigmatising. For these reasons it can
have a very negative effect on the quality of life of an individual. In one
recent study of people with dystonia, the deleterious effect on quality of
life was found to be as severe as that seen in people with multiple sclerosis
and Parkinson"s disease".
Although there is no cure for dystonia, many dystonic
conditions can be successfully managed with the right treatment. Botulinum
toxin injections, commonly known as BOTOX(R) or Dysport(R), provide an
effective treatment in 75% cases of focal dystonia.
Anyone requiring further information on this condition should
contact the Dystonia Society Helpline Support Service on 0845-458-6322 or
website http://www.dystonia.org.uk
About Dystonia
Dystonia is a neurological movement disorder characterised by
involuntary and sustained muscle spasms. It is estimated that there are up to
40,000 people in the UK affected by the condition.
There are two main types of dystonia: "generalised dystonia"
which affects many parts of the body including the legs, torso and head, and
"focal" dystonias that affects only one part of the body. Common focal
dystonia"s include the neck (cervical dystonia), eyes (blepharospasm or
chronic blinking), hands (writer"s cramp), among others. Dystonia can affect
people of all ages, although focal dystonias tend to onset in middle age.
The Dystonia Society