One of the most common symptoms of CMT is high arched feet, which makes it difficult to find well-fitting shoes with good support. Arch supports or other devices, such as good insoles, can be helpful to correct, support and maintain the foot position.
For people who have quite a lot of weakness in their leg muscles, splints or Ankle Foot Orthoses (AFOs) can often be helpful. They reduce the tendency of the foot to drop, and prevent tripping and falls. There are always new types of splint on the market, and you can discuss options with your physiotherapist. For those who experience numbness in their feet, it is helpful to take extra care of the feet. Wash and dry them carefully, and inspect the skin for small ulcers, which you might not feel. Shake out the inside of your shoes to remove small stones, and so on, and check for irregularities that could damage your skin.
Annual appointments with a neurologist or a paediatrician will help children and teenagers with CMT avoid severe problems with the feet developing. Surgery may be helpful if you have very high arched feet; either to reduce the arch and the often associated curling of the toes, or to fuse together some of the foot bones. After procedures of this sort, and any other operation, try to keep active and not spend too much time in bed, as you may notice increased difficulties in walking afterwards. Active exercise and maintaining fitness will also help to maintain mobility.
Studies have shown the benefits of exercise in keeping the less affected muscles strong and improving stamina. Exercise can also help to improve balance and stretch out tight muscles, such as the calf muscles. A small number of people with CMT may have curvature of the spine, known as scoliosis. It doesn’t usually need surgery, but the few severe cases may need to consider it. Some people may also have hip joint problems that may require surgery.
Medication and anaesthetic precautions
Make sure that any medical practitioners are aware of a diagnosis of CMT when they are prescribing new medication. In theory, there is a slight chance that some drugs and medication may have an adverse effect on people with CMT. Vincristine is the only drug that is known to carry the risk of acute worsening of CMT1A. This drug is used in chemotherapy (treatment for tumours) and patients with genetically confirmed CMT1A should not be prescribed it. As a general rule, make sure that any doctor who is about to treat you knows you have CMT.
Anaesthetics should not cause any particular problems, providing the correct protocol for people with neuromuscular conditions is followed. Spinal or epidural anaesthesia have been reported as successful techniques. Make sure the anaesthetist knows about your condition before any operation, as your respiratory function might need to be checked.
Research into CMT
As you’ll have read, over 80 genes have been identified as linked with CMT, and this is likely to increase further in future. Scientists are trying to understand more about the underlying biology of CMT and how this leads to symptoms. This knowledge is important in order to develop effective treatments. Find out the latest news on CMT research.
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