Sidbury woman behind Lyme Disease survey
Lyme Disease Action chairman backs group’s survey into often-misdiagnosed illness
A SIBURY woman is backing a new survey into the often-misdiagnosed Lyme Disease.
Herself a sufferer since 1999, but not diagnosed until 2002, Stella Huyshe-Shires from Sand, is chairman and a trustee of Lyme Disease Action, which has launched the survey to give doctors and patients a say in the diagnosis and treatment of the disease.
She said: “Normally researchers decide what to research. But they don’t always know the key questions puzzling doctors and patients.
“By conducting a national survey, we hope to find out the real difficulties that doctors an their patients face.”
Stella, who has been LDA chairman since 2009, added: “The active retired are one of the high risk groups and we are not short of those around Devon.
“They also tend to be told ‘what do you expect at your age?’ when they develop weird symptoms that a doctor cannot account for!”
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The survey, run in partnership with the James Lind Alliance, funded by the Department of Health, asks patients who have had the disease, their carers and doctors trying to treat it, what they think are the unanswered questions.
They can access the survey at www.LymeDiseaseAction.org.uk/jla and contribute feedback and questions.
Lyme disease is particularly prevalent in the South West and is passed to humans by the bite of an infected tick.
It causes a range of symptoms, including a circular red rash, headaches, stiff neck, extreme fatigue, muscle and joint pain.
It also disturbs eyesight, hearing, the digestive system and sleep. Left untreated it can go into the joints, heart and nervous system.
While the number of tick bites reported is increasing, some doctors still believe Lyme disease is rare and people have self-diagnosed, using the internet.
LDA has recently re-designed its website, which provides information and support, gives patient stories and downloadable leaflets.
It will hold its 10th annual conference at Wills Hall, Bristol, on Saturday, September 17. Places can be booked via email: conferenceteam@lymediseaseaction.org.uk.
