History/Causes
Types of CMT
Genetics
Diagnosis/Prognosis
Treatment
Living With CMT
New Research
Interesting Tid-Bits
Interview of Child with CMT and his Family
References
-Like with any other person, those with CMT have the responsibility of looking after themselves. Since there are circulation problems in the limbs, make sure that the hands and feet are kept warm. Shoes should fit well and have good support and arch support. The feet need to be checked regularly by a state-registered chiropodist to make sure that everything is the way it should be. (1)
-Mobility is an issue in people with CMT therefore; they are at risk of pressure sores. Make sure that they have a pressure-relieving cushion and make sure that they stretch out on a bed from time to time. Due to some symptoms, tripping and falling can be a greater risk, so take precautions to avoid them. (1)
-A healthy diet with low calorie content is important. Due to inactivity, obesity is more of a risk if overeating and a bad diet are added to it. (1)
-To help maintain the flexibility and muscle strength that you have make sure to get general exercise that you can do at your own pace. Overuse of any particular set of muscles will have a detrimental effect on them. Swimming is a good because it does not put extra stress on the joints. (1)
-Extra caution must be taken when undergoing local or general anesthetic. (1)
-There is no reason that a woman with CMT is not able to have children but since the disease is autosomal dominant there is a 50% chance that it will be passed on to each child. Birthing by caesarean section might be the best option because it put the least amount of stress on the body (1)
-Exercise and support from a friend can be a great help to relieve stress (1)
-There is pain that is associated with this disease; it can be in the form of sharp, sudden and short-lived, local or chronic pain. To help control this drugs are issued along with therapies such as TENS machines, acupuncture or private counseling. (1)
Disability Discrimination Act of 1995: (1)
- Outlaws discrimination against disabled people in the work place
-Requires employers to make reasonable adjustments for disabled employees without loss of pay
- Flexible hours
- Improving physical environment
-Information about disability employment
- Disability Services Division of the Employment Service has different schemes and programs that they offer and also produce a lot of booklets for finding and keeping a job
- Royal Association for Disability and Rehabilitation publishes books and information packets about employment issues including interviewing skills
-Jobcenters have disability employment advisers
- Department of Social Security provides a free telephone number for people seeking general advice and information on welfare benefits
Home adaptations: (1)
- Chronically Sick and Disabled Persons Act 1970
- If a person has to make adaptations to their home because of the nature of their disability, they are entitled to have it assessed by an appropriate professional
- If the appropriate adaptations can not be done then the local authority may have an obligation to provide suitable alternative accommodation
- Local authorities can award a number of means-tested grants to help with the costs of the adaptations/alterations
- Home Repair Assistance Grant
- Disabled Facilities Grant
Driving:
People with CMT are considered to be safe to drive by DVLA, but they are required by law to notify the DVLA if there is change in their present condition, if they do not the person could face prosecution. Driving ability can be measured by the Mobility Advice and Vehicle Information Service, this measurement would include their strength, steering force, reaction times, grip, seating position, etc for a service charge. (1)
Support:
Additional support and help can be provided by family care officers who are employed by the Muscular Dystrophy Campaign. These officers can act as advocates for the family. Contact a Family is a program that encourages mutual support between families who have children with any type of disability or special needs. MDA is able to assist with the purchase and repair of AFOs and wheelchairs; they can also help start an individualized physical therapy program. The Muscular Dystrophy Association can help with assistance in numerous ways: they can connect you to professionally facilitated support groups, evaluations for physical and occupational therapy, ensure that a flu vaccine is received, and assist in the purchase of communication devices, leg braces and wheelchairs if they are needed. (1-2)
References
1Living with Charcot-Marie-Tooth Disease Disease. The CMT United Kingdom page. Available at: http://www.cmt.org.uk/living.html Accessed March 28, 2005.
2Facts About Charcot-Marie-Tooth Disease and Dejerine-Sottas Disease. The MDA Publications page. Available at: http://www.mdausa.org/publications/fa-cmt.html Accessed March 28, 2005.