Macie Tsang

Mrs. Nourrie

English 11 Section 2

15 April 2021

Neuromuscular Disease Effects

How do you think not being able to walk or move your muscles would affect your life?

That is what individuals with neuromuscular diseases have to go through every day. According

to the Centers for Disease Control, the odds of having a child with Becker or Duchenne muscular

dystrophy is 1 in every 7,250 males (“MD STARnet Data and Statistics”). Imagine that. If each

high school has an average of 1,100 students, then there is one child with a neuromuscular

disease at one out of seven schools. According to the Mayo Clinic, children with Duchenne

muscular dystrophy have trouble moving their arms and walking, along with heart, swallowing,

and breathing problems (“Muscular Dystrophy - Symptoms and Causes.” ). In addition to these

physical complications, neuromuscular disease can also negatively affect mental health,

complicate the search for medical care, and prevent a child from attending a “normal” school

setting.

The severity of neuromuscular disease and the strenuous amounts of care needed for the

child can negatively affect the mental health of all family members, especially parents. Some

might ask, “Why do family members not take care of themselves because if they are happy, then

they are more able to care for the child, who will in turn be happy?” For some family members,

it is not a case of not wanting to care for themselves, but rather not being able to. Feelings of

guilt cause parents to focus all their attention on the child, sacrificing their own mental state,

which can occasionally lead to strain on their marriage by no longer satisfying the emotional
needs of the partner or not having the strength to confront the diagnosis and the stress that comes

with it.

Parents, especially mothers, find it difficult to accept the diagnosis. Interim Chief of Staff

for Shriners Hospital Hawaii, Dr. Jonathon Pellet, knows from his experience that “every mother

blames herself for what happen[ed] to the kid” (Pellet). Not only are mother’s the people that are

supposed to protect and nurture their child, if the neuromuscular disease is Duchenne muscular

disease (DMD), most carriers are female. This, mixed with a need to rationalize why her child

has been diagnosed with a life-altering, biologically and parentally creates a feeling of blame for

the mother. The guilt, mixed with the terminality of some diseases, makes parents more

susceptible to mental health issues.

Parents often disregard their own mental health issues to care for their child. The effects

on the parent’s mental health is so severe that researchers have established that “it is incumbent

on those caring for patients with Duchenne muscular dystrophy to counsel families regarding

their potential to suffer a major depressive episode and to advise on appropriate therapy” (Abi

Daoud). This illustrates that medical professionals understand the importance of educating

families on their possibility of developing a mental health issue, and that they should receive

proper treatment for any issues that may arise. Even with this education, family members still

may not take the time to receive proper therapy because all efforts are being focused on taking

care of the disabled child. These untreated cases of depression can lead to breaks in family

dynamic.

The emotional and financial strain of these disabilities can take a toll on the parent’s

relationship. Interviewee, Malia Livingston, remembers that the parents of a family they knew

“got divorced because the father couldn’t handle their child having a muscular disease”
(Livingston). The demandingness of these diseases are so intense that they have the ability to

push families to their breaking point. As established in the previous paragraph, parents will

disregard their mental health to care for their child. This battered mental health decreases the

parent’s resilience to the severity of the diagnosis creates an overwhelming feeling of stress that

sometimes cannot be handles. This concept can apply to the gradual deterioration of a marriage

because since the focus is on the child, parents can neglect the needs of the marriage and those of

their partner. Another contribution to these mental issues is the difficulty to coordinate and find

care.

The physical complications that appear with neuromuscular diseases can make it even

more difficult to find and receive medical care. Everyone knows that there are nonprofit

organizations for children with rare diseases, such as Shriners Hospital, but is that really enough?

While these places decrease the stress of the possibility of not being able to afford care for the

child, what happens once these children are adults. In the United States, the national limit for

nonprofit organizations is 18 (Pellet). This means that once these children turn of age, they and

their families are left to find care on their own. It becomes even more difficult when they need to

search for multiple doctors because of the preexisting health problems that accompany the

disorders.

Neuromuscular diseases make the simplest of surgeries difficult to schedule. Routine

surgeries become more complicated in individuals with DMD and other neuromuscular diseases.

Conor’s mother told the CDC that her son’s Duchenne muscular dystrophy made his cataract

surgery difficult to schedule: “Ophthalmologists (eye specialists) typically do cataract surgery at

outpatient surgery centers, but Conor needed to be at a hospital. ‘It took [them] a year and a half

until [they] found a doctor who would do it’” (Living with Muscular Dystrophy). Like many
other children with neuromuscular diseases, Conor’s DMD overcomplicates routine surgeries

and can severely delay the process. As children get older, this search for doctors will become a

more common situation.

The national limit for nonprofits to continue supporting children is 18 years of age. After

this, people are left to find their own care. Luckily because Hawaii is so small, it is not as

difficult to find care. Dr. Pellet explains that the state has two medical systems for the

transitioning adults to find care: “There's the Queens Healthcare system that involves tons of

practices and many hospitals, or the Hawaii Pacific Health system that includes Kapiolani,

Straub, and Pali Momi” (Pellet). Hawaii’s limited availability of medical centers makes it easier

to find care because there are only two to choose from. However, even with this small size,

children from the outer islands have the added complexity of needing to fly to Oahu for their

care. Not all places are small enough to have all of their doctors in one medical system.

In larger places, notably the continental United States, care coordination involves a

multitude of different doctors. Elizabeth Vroom, president of Duchenne Parent Project, notes that

as her son grows up, “it all falls apart because you go to separate cardiologists, you go to

separate pulmonologists, so all the things which are developed in care for the younger children

don’t exist for the older ones” (Hendriksen) Once Vroom’s son has become an adult, he is left to

find his own medical care, which consists of multiple different doctors to care for the various

issues DMD creates. Healthcare becomes more difficult to find as the child becomes an adult,

but education can be difficult to find in both child and adulthood.

Toxic school environments can make it difficult for children with neuromuscular diseases

to attend a typical school setting. It is no secret that bullying happens in schools around America,

but this bullying can be more aggressive towards those with physical disabilities. Although most
schools have a no tolerance policy and children are discouraged from this behavior, it still

happens, even when the bully is unprovoked. During the ages of adolescence, neuromuscular

disease progress to a point that children need to use a wheelchair. This wheelchair usage can lead

to unwarranted bullying and prevent a child from attending a school that is not handicap

accessible.

A disability, including a neuromuscular diseases, make children vulnerable to bullying. It

begins by explaining that “children with disabilities—such as physical, developmental,

intellectual, emotional, and sensory disabilities—are at an increased risk of being bullied.”

(“Bullying and Youth”). This increased risk for bullying might discourage parents from sending

their child to a school because of their protective instinct. If they do send the child to school, the

bullying can cause a child to not want to search for a new school or not return. Bullying is a risk

for any child, but having a disability increases that risk. Bullies are often not provoked by the

disabled child in any significant way.

The explosive temper of a child can lead one to lash out at a disabled child unwarranted.

The article explains that a special needs child’s “difficulty getting around the school, trouble

communicating and navigating social interactions, or [showing] signs of vulnerability and

emotional distress” “can make them be perceived as different, and increase their risk of

aggression from peers” (“Bullying and Youth”). Even if the child tries their best to avoid conflict

with classmates, they might not be able to because their classmates can be unpredictable.

Bullying is not the only factor that would prevent parents from sending their neuromuscular

disease-afflicted child to a normal school setting.

Not all schools are handicap accessible. Mrs. Livingston remembers that while looking

for high schools on Oahu for her Duchenne muscular dystrophy brother, Robert, “the only high
school that was wheelchair compatible was Iolani and he didn’t get in,” “so the public school

was Kaimuki, and Kaimuki accommodates for lots of different kinds of disabilities”

(Livingston). At the time, there were very few handicap accessible schools, which limited

Robert’s choices, causing him to go to a public school instead of a private one. If a parent does

not think that the narrow options have supportive school environments, it will most likely force

them to homeschool their child. T

Neuromuscular diseases affect parents’ mental health, complicate the search for

healthcare for the afflicted, and can prevent children from being able to attend a school. In an

effort to compensate the blame they feel for their child’s disability, parents focus on providing

care, neglecting their own mental health in the process. This personal neglect can transform into

neglect of the marital relationship and cause a breakdown in family dynamics. Although there

are programs to help children with care, caregivers sometimes must find multiple doctors to

consult, and once these children become adults, they are expected to find specialists on their

own. Traditional school environments can become toxic for a child with a neuromuscular disease

because of unwarranted bullying, and can be difficult to navigate with a wheelchair.

Although there are charities and nonprofit organizations dedicated to pediatric

neuromuscular disease, it is exactly that: pediatric. These organizations should create programs

to ease the transition from childcare to adult care. There should also be focus on the parents of

afflicted children because if their mental health is not taken care of, more strain will be put on

family members. More should be done to prevent bullying in schools across America, not just

the disabled. Children should be educated from a young age about the different types of

disabilities, whether physical or mental, and that it does not make the person inferior in any way.

All schools should be required by law to be handicap accessible to all areas. It is unacceptable
that a child might have to drive out of their district to receive a basic education because the

closer schools do not have ramps or elevators to access the entire campus. Many people I have

discussed this project with, including myself, did not understand that these neuromuscular

diseases are more common than they seem. I believe there should be more representation for

those with afflicted because it would show the world that their diagnosis isn’t just a rare

occurrence from a television show.

 Works Cited

Abi Daoud, Marie S, et al. “Depression in Parents of Children with Duchenne Muscular

Dystrophy.” Pediatric Neurology, vol. 31, no. 1,

doi:https://doi.org/10.1016/j.pediatrneurol.2004.01.011.

“Bullying and Youth with Disabilities and Special Health Needs.” StopBullying.gov, 21 July

2020, www.stopbullying.gov/bullying/special-needs.

Hendriksen, Jos, et al., directors. “Duchenne with a Future: The Power to Live.” YouTube,

uploaded by Parent Project Muscular Dystrophy, 13 November 2014,

https://www.youtube.com/watch?v=JWq4THPFBJA.

“Living with Muscular Dystrophy.” Centers for Disease Control and Prevention, Centers for

Disease Control and Prevention, 27 Oct. 2020,

www.cdc.gov/ncbddd/musculardystrophy/stories.html.

Livingston, Malia. Personal interview. 20 March 2021.

“MD STARnet Data and Statistics.” Centers for Disease Control and Prevention, 27 Oct. 2020,

www.cdc.gov/ncbddd/musculardystrophy/data.html.

“Muscular Dystrophy - Symptoms and Causes.” Mayo Clinic, 31 Jan. 2020,

www.mayoclinic.org/diseases-conditions/muscular-dystrophy/symptoms-causes/syc-

20375388?utm_source=Google&utm_medium=abstract&utm_content=Duchenne-

muscular-dystrophy&utm_campaign=Knowledge-panel.

Pellet, Jonathon. Personal interview. 19 March 2021.