Frequently Asked Questions about muscular dystrophy
Who can be affected by muscular dystrophy?
Anyone can be affected. Contrary to popular belief, muscular dystrophy is not exclusively a childhood disorder. While some types of muscular dystrophy are first evident in infancy or early childhood, other types may not appear until later in life.
How do various types of muscular dystrophy differ?
Specific disorders within this group vary in many ways. Which muscles are involved, the severity of the symptoms, the age at which the symptoms appear, how fast the symptoms progress and what pattern of inheritance the disorder follows are all factors which differ from one disorder to another.
What are the symptoms of muscular dystrophy?
Depending on the type of muscular dystrophy, those diagnosed can lose the ability to walk, speak, and in some cases, breathe. Principal symptoms include progressive muscle wasting, weakness, and loss of function. In Duchenne muscular dystrophy, there is delayed development of basic muscle skills and coordination in children. Common signs include poor balance with frequent falls, walking difficulty with waddling gait and calf pain, and limited range of movement, obesity, joint contractures, cataracts, frontal baldness, drooping eyelids, gonadal atrophy, and mental impairment (with myotonic dystrophy).
What causes muscular dystrophy?
Each form of muscular dystrophy is caused by an error in a specific gene associated with muscle function.
Is muscular dystrophy anyone's fault?
No. Muscular dystrophies are genetic diseases. Forms of muscular dystrophy can be passed on from generation to generation, or they can occur spontaneously in a single individual as the result of a mutation of a particular gene. In any case, they are not anyone's fault. Genetic counseling is recommended for families of affected individuals to ascertain the carrier status of other family members so that prenatal testing can be offered.
Is muscular dystrophy contagious?
What treatment is there for muscular dystrophy?
There is no treatment to cure muscular dystrophy yet. Physical therapy, exercise, orthopedic appliances (such as braces and wheelchairs), or corrective orthopedic surgery may help to preserve muscle function and prevent joint contractures as much as possible and improve quality of life. Steroids have been used to slow disease progression, but do not affect the final outcome. Identification of the specific genes responsible for the various types of muscular dystrophy has led to extensive research on gene and molecular therapy, but all such treatments are still experimental.
What can I do to help a friend or family member diagnosed with muscular dystrophy?
If you know someone who has muscular dystrophy, there's a lot you can do to offer help and support. For example:
- People with muscular dystrophy may need car rides, or help lifting items. For those who are in wheelchairs, helping them make their home more accessible with ramps and wider doorways can be especially beneficial.
- Those with muscular dystrophy can start to feel cut off from people, as their friends participate in activities they can no longer take part in. Plan activities that include a friend or family member with muscular dystrophy, such as playing board games or watching movies at his or her home. As time goes on, they will be the same person they've always been - just more limited in their physical abilities.
- Encourage those with muscular dystrophy to visit their local Muscular Dystrophy Canada chapter and speak with our compassionate, informed volunteers about services they can access, referrals, and peer support.
Help us raise funds to find cures and therapies for muscular dystrophy – donate or volunteer for Muscular Dystrophy Canada.
What are registrations?
A person with a disorder can register with their local chapter to access chapter support resources AND they can register with Muscular Dystrophy Canada to access support resources available there.
People without a disorder can also register to become a chapter member. All chapter members can participate in setting and fulfilling the objectives of Muscular Dystrophy Canada.