Muscular dystrophy refers to a category of genetic diseases where the voluntary and skeletal muscles responsible for regulating muscles weaken and degenerate progressively (Emery, 1987, p.47). The disease is hereditary in nature. It may occur in childhood, later in life or during the middle years of one’s life.
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The most common type of muscular dystrophy is Duchenne Muscular Dystrophy (DMD). Boys are the primary victims of Duchenne muscular Dystrophy. Its primary cause is lack of dystrophin, the protein responsible for maintaining the strength and durability of a muscle.
The disease attacks between the age of 3 and 5 years and then progresses rapidly. Statistics in The United States indicate that 21 in every3500 -500 boys is born with the disease and 400-600 new cases occur every single year (Johanson,2008).The disease does not affect girls as the gene responsible is recessive in them. They can only be carriers and chances of transmitting the disease to their children stand at 50%.
Muscular weakness in most cases of muscular dystrophy begins in the legs. The first symptom is difficulty in walking (Siegel, 1999). A child may find it very challenging to walk the way he walks normally or may have to keep the feet apart to be in a position to maintain a steady balance.
He or she may then have to depend on the arms to do basic things such as standing or walking on a staircase. The child may experience pain in the calves and may keep falling frequently. The child then has to depend on walking braces. Eventually complete walking disability necessitates the need for such a child to depend on a wheelchair for motion.
With time, the deterioration progresses to other parts of the body such as the chest, the neck, and the arms. This causes breathing difficulties and severe diseases such as pneumonia. Mental disorders and cardiac conditions are also caused by muscular dystrophy.
The severity of muscular dystrophy depends on the age and the individual. Some people may not develop symptoms and may end up experiencing the average life expectancy. On the other hand, some individuals suffer disability and eventually die from the disease.
Genetic mutation is the facilitating factor of Muscular dystrophy. Mutation of the dystrophin gene causes Duchenne and Becker muscular dystrophies while muscular dystrophy suffered in the limb-girdle area is caused by mutations in genes that are still being researched by scientists (Emery, 2008, p.34).
Children suffering from the condition tend to have a very high concentration of the enzyme. A DNA test is then conducted to determine whether the dystrophin gene has undergone mutation. If the tests still do not indicate presence of muscular dystrophy, a muscle biopsy must be done.
Physical therapy is one of the most recommended options for muscle dystrophy given that it has no definite treatment. It helps keep the tone of the muscles strong and reduces the intensity of joint contractions keeping the muscles in strong form and maintaining the flexibility of the muscles (Bushyby & Anderson, p.2001).
Use of braces to prevent stiffening of the muscles around muscles which make it painful and hard to move, provides support for a child suffering from dystrophy and gives the child a life-lease by extending the time he or she can walk.
Additionally, prednisone, a steroid, is used to reduce the rate at which muscles deteriorate in people suffering from Duchenne muscular dystrophy. The best time to begin the treatment is said to be the age of 5 years or at any age when the muscular strength of the child begins to retrogress.
The side effects of prednisone are that it causes a person to gain weak further straining the muscles that have already lost strength (Johanson, 2008, p.49). It also causes the bones to lose density making it easy to suffer from sudden fractures.
Surgery is another treatment option. Spinal fusion surgery reduces pain, lessens severe effects of curvatures, and eliminates effects of muscular severity on the breathing system. It makes it possible for a child to sit comfortably in an upright position on a chair.
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Regular vaccination is recommended for children suffering from muscular dystrophy. This is because their respiratory muscles are severely weakened. Ability to cough phlegm is incapacitated making it possible for contract mild respiratory infections (Muscular Dystrophy Canada, 2008).
Students suffering from muscular dystrophy face various challenges. Teachers need to understand the various stages of dystrophy in order to be in a position to handle such students.
The early phase of the disease, which occurs during the age of 7 years, is characterized by delay in acquiring language skills and speech problems (Siegel, 1999). He may also be drowsy, be in energy less state, and tend to fall often. Such a student will therefore find physical education classes very daunting and taunting.
The stage between 6 and 12 years is the transition stage between clumsiness in movement and full disability. A student will experience walking problems finding it very difficult to balance themselves in an upright posture. Walking on toes is quite common as the student tires to balance himself (Parker, Parker, and Icon Group International, 2002, p.17). As such, standing in class or at the field would be very difficult.
At the age of 12-14 years, the student will have lost walking ability and will need the help of a wheel chair. Activities done by the legs or arm will have to be accomplished by using a machine aids. The ability to write and the general computer skills will not have been lost at this stage because the fingers are still in a position to function effectively (Emery, 2008, p.34).
From the age of 15 and above the student becomes susceptible to acute infections of the respiratory system. Signs of cardiac failure also start setting in at this stage. Heart and respiratory conditions are usually chronic and might end up killing the student.
The most commonly used drug, the steroid prednisone has the positive effects of increasing the muscular strength of most boys. On the downside, it has negative psychological impacts on the academic progression of a student. These include increased periods of drowsiness and uncontrollable sleep and easy distraction though loss of concentration.
Patients taking prednisone tend to be overly emotionally sensitive, get irritated easily, and overreact to situations. Depression sets in very easily as the drug impairs the thinking process and therefore the student experiences difficulties in accomplishing simple tasks like reading (Emery,1987,p.54 ).
The specific learning problems experienced by a student suffering from muscular dystrophy include slow speed of grasping and understanding information. A teacher has to be very patient with such a student and has to repeat and re-repeat instructions so that the student can process them. As the students grow-up, they tend to display substantial levels of intelligence.
Their creativity level is very high because they portray high-quality visual skills (Johanson, 2008). Duchenne patients all over the world row up to become successful artists due to this character. Nevertheless, the confinement to a wheel chair due to muscular dystrophy may lead to gross stress, emotional disturbance, and depression.
Parents of children with muscular dystrophy should disclose it to their teachers in order to ensure proper care in school. To accommodate the special needs of a muscular dystrophy student, there will be a need to modify and make changes to the way classes are conducted and the entire class will be affected in the process.
If the other classmates are ignorant about what is happening to the affected student, they are more likely to harass, tease, and taunt him. Research has shown that if they are aware about what is happening to him they are more likely to support and cheer up the classmate (Bushby & Anderson, 2001.p.57).
A teacher should disclose the student’s condition to the class and the general steps the peers are expected to take to support him within the limits of the parent’s confidentiality proposal.
When modifying and scheduling class activities for the dystrophy student, it is better to include the whole class by incorporating their ideas in the affair so that it does not seem as if the ill student is being favored at their expense or if they are being discriminated against (Siegel,1999).
The teacher should apply neutral language when communicating with the class about their student’s condition. Instead of saying that the disease is permanent and terminal, the teacher should say that the disease has devastating effects.
Confinement to a wheel chair limits the physical space of a dystrophy patient. The physical liabilities for a dystrophic patient increase with time as the disease progresses leading to frustration and trauma for the student. Constant headaches and concentration lapses ends up manifesting in the behavior of such a child.
It is also difficult for such a child to keep awake during the entire school time (Parker, Parker, and Icon Group International, 2002, p.17).
A program that has been found to be very effective in actualizing general classes for muscular dystrophy students is known as The Individualized Education Program (Emery, 2008). It guides teachers towards efficient delivery of the specialized education required by a dystrophy student.
It helps integrate the needs of such as a student with those of the colleagues so that the student does not feel as if he is being discriminate and so that his or her peers do not feel as if their colleague is being accorded special treatment. It is particularly applicable in Physical education classes in order to improve both the cognition abilities of the student and to maintain a fit physical form.
The special needs of the student must be met and at the same time, they must not be diverted from the education program that is being offered to the rest of the students. Throughout the school year, updated reports on the student’s performance and progress should be submitted to the parents and the therapists in the same way reports of the rest of the students are submitted or at rates that are more frequent.
A teacher has the right to modify a generated Individual Education Program to meet the needs of his student. This after evaluating the effectiveness or appropriateness of such a program and the kind of reactions or behaviors the student is showing.
It has been recommended that the report should be subjected to review every six months because the needs and behaviors of the student keep changing with the rate of deterioration of the muscles.
Medical researchers have described a classroom environment as the best setting in which to implement an individual Education Program.
The dystrophy student is able to interact freely with his classmates, receive an appropriate education that is not alienated from the one they are learning. By doing so, the dystrophy student I able to learn and appreciate the fact that disability is not inability (Johnson, 2008).
A muscular dystrophy needs extra facilities to be able to cope in a regular school environment. These include modified transport to transfer him across various points in the school. A wheelchair comes in handy but there may be cases where a vehicle maybe required (Parker, Parker, and Icon Group International, 2002, p.17).Therapy sessions are also recommended.
Due to loss of cognitive abilities, the student must assess therapy to improve his speech skills. Physical exercise to maintain the bone structure and to exercise the faculties that he may be losing should be provided. The school can contribute costs with the parents to hire a therapist or the parents may prefer to hire a full-time physical therapist themselves.
The student must also attend regular counseling sessions to help him deal with the psychological trauma and the emotional shock he may be going through. Disciplinary measures should be modified when it comes to such a student because incidents of indiscipline may not be due to his fault or willingness. Due to loss of use of arms, legs, and the neck technological assistance should be offered to such a student to aid him in doing schoolwork.
Some dystrophy victims do not follow the age shame or pattern set for various stages of the disease. Some may suffer total disability as early as five years while others may exhibit symptoms experienced at a younger age at an older age.
The teacher must be able to evaluate and treat every dystrophy student individually without subjecting him to stereotypes about the disease. The teacher must make sure that he or she is aware of the cognitive abilities of the student, the concentration level the speech skills and how the student is likely to react in every scenario.
The weak nature of the muscles must be considered whenever a physical education teacher subjects his students to exercises that require building strength of the muscles. Regular stretching must be encouraged for the student to ensure that his joints do not contract and that his muscles do not tighten which may worsen the disability (Siegel, 1999, p.94).
Dystrophy students experience problems when using stairs.A teacher should ensure that the student does not have to use multi-storied floors and if he has to, the teacher should use activities that require use of the same floor.
The teacher should structure activities in such a way that the slowness of the dystrophy student does not weigh him down. This can be done by allowing him to lead or set the pace for other students in a line (Bushby & Anderson, 2001).
Sitting upright proves difficult as the disease progresses. A raised chair should always be available for the dystrophy student to rest on. A dystrophy child should not be allowed to overwork himself by gong fir activities that require long distances.
Swimming has been established as one of the most efficient activities that a dystrophy student can engage in. He does not have to use all his muscles to support him due to the gravitational pull. He can also play with his friends without tripping or losing balance and it provides an excellent opportunity to improve his breathing activities (Emery, 2008).
Peer counseling is very helpful in helping a dystrophy students engage, interact, and integrate with his peers. This is best implemented through putting other students in charge of assisting the dystrophy student with his activities (Siegel, 1999, p.95). It is also wise to consult with neighboring schools to know whether they have students suffering from the same condition.
Arrangements maybe made such students to share their experiences with the teachers who will be able to compare the strategies and policies put in place to help such students cope with normal school life. For such programs to be successful, they must be on a voluntary enlistment.
The nutrition needs of a student suffering from muscular dystrophy should never be neglected and must be given undivided attention. Respiratory infections may lead to choking as food may be diverted to respiratory channels.
Special feeding utensils are thus required. The student has to be supervised during meal times and must be accorded assistance. Liquid foods should consider and schools should explore the possibility of providing special feeding utensils for their students to reduce incidences of choking.
It must be noted that the disease disrupts the family of the dystrophic student. The family experiences shock and trauma and go through phases of denial and emotional time. With time, most families come to accept the condition and give the necessary support to their child who is just a victim of circumstances. The family also faces financial problems due to the high cost of available medication.
The level of dependency required by the child also drains the family. Siblings might also express resentment as they may feel as if they are being left out and ignored. Teachers must be in a position to understand the parents.
They should assist and cooperate with them rather than viewing them as being over-protective of the child. They should also understand fits of anger and emotional outbursts as such parents maybe dealing with depression (Siegel, 1999, p.100).
Parents and teachers are requires to cooperate at all stages of the disease. Instances have been reported where schools compel students who have walking problems to use a wheel chair while such students are still walking home (Johnson, 2008).
This creates confusing in the muscles, which may have devastating effects on the health of the child. The programs at school must be compatible at home so that the transition from the mobility stage to that of loss of mobility takes place effectively.
The parents and the teachers must combine their efforts to ensure that the student concentrates on his strengths rather than his disabilities. It is very important to keep the student empowered through awareness. The student should be exposed to a lot of literature on the condition and a network of successful people suffering from the diseases.
If symptoms of depression appear, the student should be counseled intensely and the services of a therapist should be sought (Bushby &Anderson, 2001). Students who tend to withdraw from lifer those who retreat to gadgets such as the television must be encouraged that there is life with the disease and academic knowledge will still benefit them in the future.
Bushby, K., & Anderson, L. (2001). Muscular dystrophy: Methods and protocols. Totowa, N.J: Humana.
Emery, A. (1987). Duchenne muscular dystrophy. Oxford: Oxford University Press
Emery, A. (2008). Muscular dystrophy. Oxford: Oxford University Press
Johanson, P. (2008). Muscular dystrophy. New York: Rosen Pub. Group.
Muscular Dystrophy Canada. (2008). Movement: The national magazine of Muscular Dystrophy Canada. Toronto: Muscular Dystrophy Canada.
Parker, J., Parker, M., & Icon Group International, Inc. (2002). The 2002 official patient’s sourcebook on muscular dystrophy. San Diego, Calif: Icon Health Publications.
Siegel, I. M. (1999). Muscular dystrophy in children: A guide for families. New York: Demos.