CMTUK, Bournemouth Videos

Highlights from CMT Awareness Month 2023
Well, that's a wrap for this year's CMT Awareness Month. Thank you so much for all your support - we couldn't have done any of it without you. Please take a look at the video to watch some of the highlights... Don't forget, we are here for you all year (not just during October!) Together we are stronger... #cmtawarenessmonth #ShineALightOnCMT #charcotmarietooth #cmt #raredisease

Here is the third of our bite sized information videos from CMT specialists, shining a light on CMT during CMT Awareness Month. In this video, we talk to Gita Ramdharry, an Allied Health Professional at the National Hospital for Neurology and Neurosurgery in London. 📽 In this video, Gita talks about: ⭐ CMT physio research projects ⭐ Tips for people living with CMT ⭐ Resources available We hope you find it useful. Here are the links that Gita Ramdharry mentions in the video: 🔗 NMRR Youtube Channel: https://www.youtube.com/@neuromuscularrehabilitatio1809 🔗 UCL Neuromuscular Rehabilitation Research Group webpage: https://www.ucl.ac.uk/centre-for-neuromuscular-diseases/research/research-core-activities/neuromuscular-rehabilitation-research-group 🔗 Neuromuscular Bridges Self-Management Support page: https://nmd.bridgesselfmanagement.org.uk/ 🔗 Neuromuscular Pilates Videos: https://www.youtube.com/watch?v=MN5OJs-ZHm8&t=4s 🔗 Exercise and neuropathy video. It was made for people with inflammatory neuropathy, but the principles are exactly the same for people living with CMT: https://www.youtube.com/watch?v=GWidFm9OLFA #ShineALightOnCMT #CMTawarenessmonth #charcotmarietooth #cmt #cmtaware #Togetherwerestronger

CMT Research with Alexander Rossor
Here is the second of our bite sized information videos from CMT specialists, shining a light on CMT during CMT Awareness Month. In this video, we talk to Alexander Rossor, a neurologist based at the National Hospital for Neurology and at Guy’s and St Thomas’ NHS Foundation. 📹 In this video, Alexander talks about: ⭐ Some of the key CMT research projects going on at the moment, or will be launched in the future ⭐ Treatments coming forward for CMT1A ⭐ What the CMT community can do to get involved, or to help We hope you find it useful. #ShineALightOnCMT #CMTawarenessmonth #charcotmarietooth #cmt #cmtresearch #research

CMT Footcare with Podiatrist Robert Isaacs
𝐂𝐌𝐓 𝐅𝐞𝐞𝐭 Today, we are sharing the first of our bite sized information videos from CMT specialists, shining a light on CMT during CMT Awareness Month. This video has kindly been created by Robert Isaacs, a podiatrist with a specialist interest in neurological conditions, especially Charcot Marie Tooth. In this video, Robert talks about: 💡How CMT affects the feet 💡Top 5 tips for looking after your feet if you have CMT We hope you find it useful. #ShineALightOnCMT #CMTawarenessmonth #charcotmarietooth #cmt #cmtfeet #podiatry #podiatrist

We have put together a new fact sheet on CMT for CMT Awareness Month. Making the general public as well as health professionals more aware of the condition helps those living with CMT with everyday life and can also help to get a quicker medical diagnosis. If you would like to download our fact sheet, please click here: https://bit.ly/CMTFactSheet23 Thank you [images taken from the factsheet] #ShineALightOnCMT #CMTawarenessmonth #charcotmarietooth #cmt #cmtaware #Togetherwerestronger

𝐃𝐨 𝐲𝐨𝐮 𝐤𝐧𝐨𝐰 𝐰𝐡𝐚𝐭 𝐂𝐌𝐓 𝐢𝐬? Many people have not heard of CMT, even though it is the most common inherited neurological condition. That’s why we are aiming to spread the word as widely as possible about the condition during October, CMT Awareness Month. Please read on to find out more… 𝐇𝐨𝐰 𝐦𝐚𝐧𝐲 𝐩𝐞𝐨𝐩𝐥𝐞 𝐢𝐧 𝐭𝐡𝐞 𝐔𝐊 𝐡𝐚𝐯𝐞 𝐂𝐌𝐓? In the UK, around 25,000 people (approx: 1 in 2,500) are thought to have CMT (Charcot-Marie-Tooth). There are over 100 types of CMT. 𝐖𝐡𝐚𝐭 𝐞𝐱𝐚𝐜𝐭𝐥𝐲 𝐢𝐬 𝐂𝐌𝐓? CMT is a hereditary condition that damages the peripheral nerves. These nerves run from the spinal cord to the extremities and are responsible for passing on commands from the brain to the muscles in the arms and legs, and for passing information back to the brain about sensations, such as pain, heat, cold and touch. Because of the nerve damage, people with CMT may find that their muscles (particularly in their hands, arms, feet and lower legs) become weaker over time, and the sense of feeling can become dull or numb in the same areas. Hereditary Neuropathy with tendency to Pressure Palsy (HNPP) and Giant Axonal Neuropathy (GAN) are related conditions with similar symptoms to CMT. 𝐖𝐡𝐚𝐭 𝐚𝐫𝐞 𝐭𝐡𝐞 𝐬𝐲𝐦𝐩𝐭𝐨𝐦𝐬 𝐨𝐟 𝐂𝐌𝐓? CMT affects people very differently, even within the same family. Here are some of the more common symptoms: • It can cause the muscles in the feet, legs, hands and arms to weaken, which causes major difficulty with walking, balance and hand function. • People with CMT frequently have foot drop (difficulty lifting the foot at the ankle) or pes cavus (high arched feet). • It can cause stiffened joints that result in deformities of the feet and hands. • Rarer symptoms can include breathing problems, sleep apnoea, scoliosis

Thank you to all our members who sent in their CMT questions for our Q&A session with Professor Mary Reilly, Professor of Neurology at the Department of Neuromuscular Diseases at UCL Queen Square Institute of Neurology. We are delighted to announce that Mary has answered as many of the questions that we could possibly fit into the timeframe! From questions such as ‘what CMT research is happening at the moment’ to ‘is there any point in asking one's sons/daughters to be tested for CMT since there is no treatment/ cure available for it?’, Mary shares with you her invaluable insights. Please click to view the video (which includes subtitles)... #Togetherwerestronger #CMTawarenessmonth #charcotmarietooth #cmt #cmtaware

What does it mean to be a CMTUK member?
CMTUK is a charity that provides information and support to the CMT community. We provide access to news of research programmes as well as resources for managing CMT. Plus membership subscriptions help CMTUK support those living with CMT. Without the support from our members, we simply wouldn’t be able to provide the support we do. We asked our members what their membership means to them. Take a look at the video to see some of their comments… If you would like to find out about becoming a member, please take a look here: https://www.cmt.org.uk/cmtuk-membership-benefits/ #Togetherwerestronger #CMTawarenessmonth #charcotmarietooth #cmt #cmtaware

As part of CMT Awareness Month, today we delve behind the scenes at CMTUK, meeting Kim Shires, CMTUK’s Information Support Advisor and one of the voices behind the CMTUK helpline. Kim, who has CMT herself, offers factual, practical and emotional support to the CMT community (including people living with CMT, carers, family members, employers and schools). Watch the video to find out more… #CMTawarenessmonth #charcotmarietooth #cmt #cmtaware #Togetherwerestronger

What is CMT (Charcot-Marie-Tooth)?
🗓This month is CMT Awareness Month 🤷‍♀️Have you heard of the medical condition CMT?🤷‍ Many people have not heard of it, even though it is the most common inherited neurological condition. There are over 100 types of CMT. In the UK, around 25,000 people (approximately 1 in 2,500) are thought to have CMT. ❓What is CMT❓ Charcot-Marie-Tooth disease (CMT) is a hereditary condition that damages the peripheral nerves. These nerves run from the spinal cord to the extremities and are responsible for passing on commands from the brain to the muscles in the arms and legs, and for passing information back to the brain about sensations, such as pain, heat, cold and touch. Because of the nerve damage, people with CMT may find that their muscles (particularly in their hands, arms, feet and lower legs) become weaker over time, and the sense of feeling can become dull or numb in the same areas. Hereditary Neuropathy with Pressure Palsy (HNPP) is also a condition that is linked to CMT with comparable symptoms. ℹ️ What are the symptoms of CMT? ℹ️ CMT affects people very differently, even within the same family. Here are some of the more common symptoms: • It can cause the muscles in the feet, legs, hands and arms to weaken, which causes major difficulty with walking, balance and hand function. • People with CMT frequently have foot drop (difficulty lifting the foot at the ankle) or pes cavus (high arched feet). • It can cause stiffened joints that result in deformities of the feet and hands. • Rarer symptoms can include breathing problems, sleep apnoea, scoliosis, hip dysplasia and vocal cord paralysis. • It can cause chronic pain and fatigue. 👉To find out more about CMT, click here: https://www.cmt.org.uk/cmt-and-you/what-is-cmt/ ❓Why Does CMT Need an Awareness Month❓ As CMT is little-known, raising awareness helps the CMT community’s friends, family, colleagues and wider public to understand the condition more.