Simply because I think it is important to spread awareness about lesser known disabilities that nonetheless impact the lives of millions of families in this world I have compiled here a few important facts about Charcot Marie Tooth disease.
My son Jake was diagnosed with this neuro-muscular condition at age three and at age 10, he continues to prove that children can grow to become confident, resilient and most importantly happy individuals, even in the face of adversity.
HERE ARE SOME IMPORTANT FACTS ABOUT CMT
- Charcot-Marie-Tooth Disease (CMT) is the most common inherited neurological condition, affecting 1 in 2,500 people or 150,000 in the United States and 2.8 million people worldwide.
- Due to damage to the nerves, it causes progressive weakness and wasting of muscles in the lower arms and legs. It is hereditary (usually but not in all cases) and there is no cure.
- Being aware of CMT and its effects can help teachers, parents, friends and family support the child’s involvement during activities, both inside and outside of the home.
CMT LOOKS DIFFERENT IN EVERY CHILD.
Some effects that you may notice include:
- The way the child walks walk and apparent clumsiness.
- Use of orthotics or leg braces.
- Frequent falls, tripping over their feet, sometimes fall-related injuries.
- Trouble negotiating stairs/ramps and keeping up with their peers in physical activities.
- The need for mobility aids such as a wheelchair or crutches.
- Due to CMT’s progressive nature, you may notice a decrease in the child’s ability to do various activities. The rate of CMT’s progression varies from one month to another or from year to year.
What to Expect
- Lack of muscle and dexterity in the fingers and hands and difficulty with fine motor skills such as buttoning, tying, opening objects, zipping or writing.
- Slowness, or difficulty, in rising from a seated position on the floor or from a chair to standing position and inability to move around as quickly as typically expected.
- Inability to keep up with peers in physical activities such as, but not limited to, running, jumping, squatting, walking, climbing, balancing and heel to toe movement.
How To Respond
- Be kind and sensitive to issues such as slowness. Avoid spotlighting or embarrassing the child!
- Simply being informed is a great start. It is helpful when others know about this type of disability and how it affects the child’s appearance, abilities and behaviour. With accurate knowledge peers are less likely to tease and make mean remarks.
- Cognitive issues are definitely NOT a feature of CMT, even though slowness and limitations in physical abilities can often be misinterpreted as a cognitive problem.
- Once again (because it is worth repeating) CMT kids can be super smart however they may also experience a variety of symptoms such as limitation in coordination, fatigue, pain, tremors, anxiety and emotional factors related to having a disability.
When Out and About
- Allow the child to participate in all activities he or she wants to, but let him or her “self-limit.” If the child is unable to complete the activity, it is fine for him or her to sit it out. Trust their instincts. If he or she can do it, then let him or her!
- Never single out the child as weak or a “complainer” if he or she can’t complete a task or takes a longer time to complete it. CMT is not a matter of choice or effort.
- Remember children are often worried about being teased, taunted or humiliated, especially when they have a physical disability. Be compassionate and understanding.
- Always encourage the child and evaluate the individual bases on their efforts, in regard to potential rather than his skill level. Remember their best effort will almost definitely look different from other people’s best.
If you have a child with CMT or a similar disability and would like to learn more about what you can do to raise a happy and resilient child with special needs click here.
NOTE: The above post has been adapted from information received from Charcot Marie Tooth Association Australia.