FacebookTwitter
alt= alt= alt=

2015

News clips and articles from Awareness Month, 2015

 

Campaigner Making film to raise awareness of rare disease

Campaigner Making film to raise awareness of rare disease

Muswell Hill campaigner making film to raise awareness of rare disease 09:00 04 June 2016     Anna Behrmann Doug Sager (centre) with volunteers taking part in the film. Picture: Nigel Bewley The activist hopes to draw attention to a condition that affects 25,000 people in the UK, but many people – including health professionals – have not heard of it. Charcot-Marie-ToothRead more...

Saffron Walden teenager defies rare neurological disease by taking part in 10 triathlons

Saffron Walden teenager defies rare neurological disease by taking part in 10 triathlons

A determined teenager from Saffron Walden is defying a rare, inherited neurological disease by taking part in 10 triathlons this year - and has raised more than £3,000 for a charity which is helping him and his family through it. Charlie Stanton-Stock, a pupil at Saffron Walden County High School, was diagnosed with Charcot-Marie-Tooth (CMT) just over a year ago after his mum Tabitha first noticeRead more...

Kincardine mum Susan determined to live her life after being diagnosed with rare Charcot-Marie-Tooth disease

Kincardine mum Susan determined to live her life after being diagnosed with rare Charcot-Marie-Tooth disease

A KINCARDINE mum who was diagnosed with the rare Charcot-Marie-Tooth disease is raising awareness of the incurable condition. Susan Wallace, 52, of Bank Street, has lived with CMT all her life but it’s only in the past few years that she realised what she had been struggling with. Despite the name, it’s actually a neurological disease which can cause uncontrollable pain, chronic fatigue, balancRead more...

Necton teenager Christopher Vear battles the odds to study at University of East Anglia

Necton teenager Christopher Vear battles the odds to study at University of East Anglia

A student achieved a lifelong dream this week when he began his course at the University of East Anglia despite suffering from a rare degenerative disease. Now Christopher Vear, from Necton, is hoping he can help encourage others to achieve their goals as well as raise awareness of Charcot-Marie-Tooth disease (CMT). Symptoms of CMT include muscle weakness, numbness in the feet and hands and Read more...

Hartlepool mum with rare condition reveals her ‘worst nightmare’ - that her children also have it

Hartlepool mum with rare condition reveals her ‘worst nightmare’ - that her children also have it

A mum is facing her ‘worst nightmare’ as she worries the disease which has blighted her life may have been passed onto her children. Amanda Storm, from Hartlepool, has Charcot-Marie-Tooth (CMT) disease, which is a group of inherited conditions that affect the peripheral nerves. Amanda, 42, was diagnosed with CMTtype 1 at the age of 19, and believes it has been passed on from her mother’s sidRead more...

Retired plasterer talks about his experience of Charcot Marie Tooth disease

Retired plasterer talks about his experience of Charcot Marie Tooth disease

A RARE neurological disease means former plasterer Colin Williams has slowly had to change his lifestyle. But the 54-year-old wants to share his experience of Charcot Marie Tooth disease – named after the scientists who discovered it – in a bid to help others who might also be living with the condition. It’s important to understand CMT and the charity gives a lot of support to people - CRead more...

And the bride wore white Dr Marten boots...

And the bride wore white Dr Marten boots...

A determined woman with a rare neurological condition has battled against the odds to succeed personally and professionally. Reporter Freya Findlay finds out about her courageous journey. Sarah-Lyn Strong finds it difficult to walk, which is hardly surprising as she only has size one-and-a-half feet to balance on. The 26-year-old doesn’t even use all of that small foot either – she walks balanRead more...

Settle's Sam Lewis blogs for CMT Awareness Month on living with the disease

Settle's Sam Lewis blogs for CMT Awareness Month on living with the disease

A WOMAN from Settle is spending September letting the world know what it's like to live with a debilitating condition which has greatly affected her mobility. Sam Lewis was diagnosed with Charcot-Marie-Tooth Disease (CMT), an incurable neurological disorder affecting mainly the legs and arms, at the age of five. And since she lost her job as a software tester with Skipton Building Society inRead more...

'Teachers humiliated and embarrassed me' - woman with neurological condition hits back at bullies

'Teachers humiliated and embarrassed me' - woman with neurological condition hits back at bullies

After years of bullying at both school and in the workplace, one woman hopes to use her experiences to help others suffering from a rare medical condition. Krishna Talsania is a 31-year-old community support worker who spends her days caring for older adults with mental health illnesses. Yet despite her positive outlook, she often struggles to stand long enough to cook or walk for long distaRead more...

Coverage in My Weekly and OK! Magazine

Coverage in My Weekly and OK! Magazine

Two small pieces have appeared in these popular magazines!     Read more...

Donate Button

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information:
verify here.

Search only trustworthy HONcode health websites: