Throughout September, a charity is raising awareness of a little known, genetic, neurological disorder called Charcot-Marie-Tooth (CMT) that can cause uncontrollable pain, chronic fatigue and deformities in the hands, lower legs and feet, leading to balance problems and falls.
CMT Awareness Month is being launched by charity Charcot-Marie-Tooth UK on Saturday 1 September 2018. Last year, the campaign received an unexpected boost when former Girls Aloud star, Cheryl Tweedy, posted on Instagram about the condition, which affects her friend’s son.
Leading neurological expert, Professor Mary Reilly, estimates around 23,000 people in the UK have Charcot-Marie-Tooth, which is named after the three scientists who discovered it.
Steadily progressive, it causes muscle weakness and wasting in the lower legs and feet, leading to problems like hammer toes, restricted mobility, and uncontrollable pain. The hands and fingers are also affected, making tasks needing fine motor skills, such as fastening shoe laces and buttons, very difficult. Although CMT is not life-threatening, for many, it will impact on and significantly reduce the quality of their lives, with some people even ending up as wheelchair users.
This year’s campaign aims to raise awareness of the symptoms of CMT among people who have the condition, but have not yet been diagnosed; make more medical professionals aware of the condition so people who have CMT can get diagnosed and seek help; let people who have CMT know that the charity exists and is there to offer advice and support; and to raise funds to help Charcot-Marie-Tooth UK members and pay for vital research into the condition.
CMT UK’s chief operating officer, Karen Butcher can trace the CMT back six generations in her family.
She said: “There are still too many medical professionals including GPs, physiotherapists, orthotists, surgeons – and even neurologists – that still don’t know what CMT is, therefore an integral part of this year’s campaign will be to educate them about the condition, so they can help make a diagnosis if needed.
“It is also important for us to reach those people who think they might have the condition, but haven’t been diagnosed yet. Sometimes the symptoms aren’t obvious, but due to the fact that CMT affects the hands and feet, it could be they have trouble balancing, find they regularly trip or fall over and are constantly tired. For some women, a telling sign is that they can’t wear high heel shoes due to high arches and hammer toes.
“There could be many reason for symptoms like these, but if you have any it would be a good idea to ask your GP about CMT – early diagnosis helps improve the lives of those with the condition and because there’s a 50% chance it can be passed on from a parent to a child, professional genetic counselling can also be given.
“We know it’s an ambitious strategy but ideally, we’d like every new person told they have CMT to be automatically referred to us at the point of diagnosis, so we can offer our support with benefits, jobs and family issues and advise them on where to get specialist medical help.”
Professor of Clinical Neurology and Consultant Neurologist at UCLH, Mary Reilly, is also Patron of Charcot-Marie-Tooth UK.
She explains: “CMT has many different characteristics, but commonly there is weakening and loss of muscle and reduced sensation, predominantly in the feet and legs, but also in the hands and arms in the advanced stages of disease. These lead to a range of orthopaedic complications, leading to a variety of mobility and dexterity problems, and sometimes scoliosis.
“CMT does not describe a single disorder, but a group of conditions. It is important to determine exactly what kind of CMT someone has, in order to improve their quality of life and this can only be done once a diagnosis is considered in a patient. Anecdotal evidence from CMT UK tells us this takes much longer than we would like and many people put up with CMT for a long time thinking they are clumsy or have funny feet, suffering in silence when they could be receiving help and support.
“As a Professor of Clinical Neurology, whose main clinical and research interest is inherited neuropathies like CMT, I have first-hand experience of how useful and critical the input from Charcot-Marie-Tooth UK is to this patient community. The charity provides an excellent information resource for patients and everyone we see in the clinic is give its details to access its literature, website resources and online discussion forums.”
Charcot-Marie-Tooth UK offers advice on how to manage the condition as well as support with benefits, jobs and family issues. It says that while CMT is currently incurable, it can be managed effectively, so the right referrals to the right clinicians are crucial to improve the lives of those with the condition and proper genetic counselling should be received so the risks to the next generation can be learned.
‘Springboard are not closing because we were increasing the rent’ says Leader of Crawley Council
Reports that the charity will have to close their Langley Green site because of rent increase are just not true says Councillor Peter Lamb.
In response to the claims that the charity Springboard would have to close their Langley Green site due to a rent increase by Crawley Borough Council, Leader the Council Peter Lamb has written publicly to address the issue.
Posting on his own blog he says:
“I’m aware that a number of mistruths are being circulated around about this, so in the interests of fairness I thought you might like a true account of events.
When Springboard opened they decided to take on a commercial property at a commercial rent.
“I agreed to look at freezing the rent and guaranteeing the council’s grant funding for a number of years”
At this time all the risks were highlighted to them, but they decided to take on the property nonetheless and various public sector organisations provided grant funding to help set the property up and pay for some of the running costs.
Last year I met with the new chief executive of the charity who flagged up that they were in financial difficulties, that he understood the circumstances under which the charity had taken on the property but they were struggling.
At the time I agreed to look at freezing the rent and guaranteeing the council’s grant funding for a number of years and I was given to understand that that might be enough to ensure the charity’s presence in the town. I looked into it and reported back that we could commit to such an arrangement.
“It is very sad that the charity is closing but it is not though any unreasonable behaviour on the council’s part“
When I met with the chief executive again in February I was informed that the charity’s financial position had worsened and that freezing the rent and guaranteeing the grant would not be enough for the charity to be able to maintain its presence in Crawley.
I said that we weren’t in a position to commit to the tens of thousands of pounds in additional funding which were requested, but that we’d be willing to form part of a solution alongside WSCC and the CCG who have legal responsibility for the groups Springboard works with.
For some reason this was not seen to be seen as an acceptable solution and I did not hear anything further until I was informed Springboard were closing.
Springboard are not closing because we were increasing the rent (despite their signing up to that contract), nor because of any cuts to their grant funding by CBC but because their financial position worsened due to the loss of a major donor and Crawley Borough Council were not in a place to make up the gap without the support of the two organisations legally responsible for Springboard’s client group.
It is very sad that the charity is closing but it is not though any unreasonable behaviour on the council’s part, particularly when you consider we were the only organisation which expressed a willingness to help despite having no formal remit to do with Springboard’s work.”