Connect with us

Charity

Awareness month for Charcot-Marie-Tooth

Little known, neurological condition can cause balance problems and falls, pain, fatigue and deformities in hands, lower legs and feet.

Published

on

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.

More news: Crawley man assaulted and mugged by group in West Green

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.

Find out more at www.cmt.org.uk or contact 0300 323 6316 or donate by visiting www.justgiving.com/CMT

Charity

Largest charity Dragon Boat race at Tilgate Park ever!

This year’s festival was the hospice’s biggest ever to date, with more teams than ever before taking to the lake.

Published

on

St Catherine’s Hospice annual Dragon Boat Festival returned to Tilgate Park with a splash yesterday (Sunday 9 September), in a fantastic day of free family fun!

Credit: SARA FERMORE AND TOBY PHILLIPS PHOTOGRAPHY.

Teams were made up of local businesses, including Crawley teams: Irwin Mitchell, Elekta, Grant Thornton, UK Power Networks, B&CE, CAE Training & Services, Vines BMW & Mini, Childcare & Learning Cranbrook, Inspiration Healthcare, KPMG, Search, Siemens, Smith & Western, St Catherine’s Hospice, Thales, Virgin Media, Novo Nordisk, and Oriel High School
who battled it out to be crowned Dragon Boat Champions 2018.

Credit: SARA FERMORE AND TOBY PHILLIPS PHOTOGRAPHY.

Speaking on the day, George De Silvo, Corporate Associate from Irwin Mitchell said:

“The Irwin Mitchell team has really enjoyed getting involved with the Dragon Boat Festival. St Catherine’s is our Charity of the Year and so we’ve been raising funds for them since January. Hearing about the Dragon Boat Festival got the whole office excited and motivated to do as much as we can to help such a great cause. I’m so pleased our Noah’s Ark survived!”

Credit: SARA FERMORE AND TOBY PHILLIPS PHOTOGRAPHY.

Ian Watson, Head of Software Engineering at Elekta said,

“We’ve been taking part in Dragon Boats for many years. It’s a big event and brings so many people from local businesses and the local community together for a great cause. What St Catherine’s does resonates a lot with what we do at Elekta, helping people at a moment of need in their lives. The hospice is a great cause to support.”

St Catherine’s team, Credit: SARA FERMORE AND TOBY PHILLIPS PHOTOGRAPHY.

Grant Thornton were another Crawley team competing. Between races, John O’Mahony, Partner at Grant Thornton, said:

“We’re very proud to be associated with St Catherine’s Hospice. They do wonderful work and we’ve had great fun fundraising. Our team ‘Sea’s the Day’ are making great progress during our heats and we’re feeling very optimistic!”

Credit: SARA FERMORE AND TOBY PHILLIPS PHOTOGRAPHY.

Those on the shorelines tried their luck at traditional fête games such as hook a duck and a penalty shootout, whilst younger visitors sprung into action on giant inflatables. Visitors also tucked into tasty food from onsite vendors and enjoyed refreshing drinks from the onsite bar, provided by Sussex Event Bars, who donated a percentage of profits to St Catherine’s.

Credit: SARA FERMORE AND TOBY PHILLIPS PHOTOGRAPHY.

On the lake, teams showed true team spirit as they raced across the water in Chinese Dragon Boats.

DHL team, Credit: Sara Fermore and Toby Phillips Photography.

After a full day of races, DHL Express powered through to be crowned champions, with a winning time of 57 seconds, which was two seconds faster than last year’s winners.

The Elekta Crew, Credit: SARA FERMORE AND TOBY PHILLIPS PHOTOGRAPHY.

Amanda Phelan, Operations Manager at DHL Express, said:

“This is our third year competing and it’s always such a lovely, fantastic day. The second year we took part we came in at second place so we were here to win today. And we’re thrilled we managed it!”

Grant Thornton, Credit: SARA FERMORE AND TOBY PHILLIPS PHOTOGRAPHY.

Close behind, in second place, were Vines Ltd with Vines Beemer taking the third place trophy.

Vines Beemer, Credit: Sara Fermore and Toby Phillips Photography.

Winning teams were presented with medals and trophies by Giles Tomsett, Chief Executive at St Catherine’s, and The Worshipful Mayor of Crawley, Councillor Carlos Portal Castro.

Vines MINIons, Credit: SARA FERMORE AND TOBY PHILLIPS PHOTOGRAPHY.

Vines of Gatwick proudly sponsored the festival, alongside entering two teams. Darren Buche, MINI

Sales Executive at Vines of Gatwick said:

“Every year, we have a fantastic day at St Catherine’s Dragon Boat Festival. It’s been great seeing even more teams competing this year to show their support for the amazing work St Catherine’s does caring for people in the community around us. It’s a fun day out for us as colleagues and it’s brilliant to raise money for such a worthwhile cause. We’re pleased that our efforts will help more people in our community in the future. We’re already looking forward to signing up for next year’s race!”

Credit: SARA FERMORE AND TOBY PHILLIPS PHOTOGRAPHY.

St Catherine’s Dragon Boat Festival is one of the local hospice’s biggest annual fundraisers. The event will help them provide expert end of life care to local terminally ill people and their friends and family, when life comes full circle. Currently, the hospice can only care for one in three people. But with the support of the community at events like Dragon Boats, the hospice wants to make sure that nobody faces death and loss alone.

Credit: SARA FERMORE AND TOBY PHILLIPS PHOTOGRAPHY.

Suzanne Davis, Corporate Fundraiser at St Catherine’s, said:

“We’d like to thank everyone who supported or took part in this year’s Dragon Boat Festival. Your efforts take us a step nearer to reaching everyone who needs us. We hope you all enjoyed the day as much as we did!

UK Power Networks, Credit: Sara Fermore and Toby Phillips Photography.

To find out about future St Catherine’s events, or how you can support the hospice, visit: www.stch.org.uk.

Continue Reading

Trending