A family of fibromyalgia sufferers in Chesterfield has bought the debilitating effects of this little-known health condition under the spotlight through their campaigning efforts.

Sisters Adrienne, Leann and Sara Lakin, with the backing of local MP, Toby Perkins, have attracted over 27,000 signatures on their change.org Petition which means that parliament must review classifying the disorder as a disability.

Adrienne had to give up work in October 2016 due to the symptoms of this invisible condition, namely chronic fatigue, restless leg syndrome leading to insomnia, pain around the body and an inability to concentrate - otherwise known as ‘fibro fog’. As the condition isn’t classified as a disability, Adrienne has had to get by on employment and support allowance (esa)  – although she’s unfit to work. Adrienne explained: “If fibro were classed as a disability, employers would have to be flexible and we would get the same financial support as any other disabled person.

“We’ve been overwhelmed by the support we’ve received. It just goes to show how many people have been suffering in silence.”

St Michael All Angels church, Brimington, Chesterfield will be lit up in purple and hosting a fundraising event on 12 May - with refreshments and a tombola in support of Fybromyalgia Awareness Day. Please go along to show your support and also sign the Lakin’s petition here.
 

Coffee and hand-outs at a support group.

People across Derbyshire with a long-term condition are benefiting from a programme which is helping them to self-manage their illness more effectively and live a fuller life. The Living with a Long-Term Condition Programme is funded by  Derbyshire County Council in partnership with Citizens Advice, South Derbyshire. The six-week course (delivered one day a week for 2.5 hours) aims to support people with a long- term health or medical condition deal with pain, fatigue, stress and depression, as well as provide a forum to meet with others and share experiences. Topics covered include healthy eating, relaxation, appropriate physical exercise, pacing yourself, and communicating with friends, family and health professionals.  

The programme is delivered by two volunteer tutors who themselves live with long-term conditions and can give you practical advice based on their own life experience. Leonie Martin, who was diagnosed with multiple sclerosis in 2000, is a volunteer tutor on the Chesterfield group.

“Although the health professionals gave me all the medical advice, I still felt like I was quite alone coming to terms with the conditions and its side effects. Many people don’t want to burden their families with their concerns, and GPs simply don’t have the time, so this course is a real source of practical and emotional support.”

The programme, which launched in September 2016, has so far supported more than 180 people across the county. Co-ordinator Karen Ziglam said: “The feedback has been great. People have said that the programme has really helped them to feel more positively about life, as well as advising on practical changes they can make to improve their wellbeing.”

Barbara Saunt from Bolsover, was diagnosed with non epileptic seizures in 2014 and has been attending the programme in Chesterfield. She said: “The group has provided me with practical advice, for example how to control my breathing to stay calm. I've also learnt a lot about other long-term conditions and sharing experiences with others has made me feel less alone.”

Courses are due to start in Ilkeston later this month, and in Matlock, Swadlincote and Eckington in June (limited places). Other courses will commence in September in Belper, Chesterfield, Glossop, Clowne, Long Eaton, Ashbourne and Swadlincote. Contact Karen Ziglam for further information or to reserve a space on a future course via: kziglam@southderbyshirecab.org.uk or Tel: 01283 210107. 

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Image: Kate Dawson