This article provides an overview of muscular dystrophy in children and guidance for parents.
There are over 30 types of muscular dystrophy ranging from mild to severe.
Two of the most common types include Duchenne and Becker muscular dystrophy.
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Muscular dystrophy is a genetic disease, meaning it often runs in families.
With MD, a persons muscle issues usually worsen over time.
The time to decline or degeneration in muscle movement can vary.
Boys
Males are more likely to get both Duchenne and Becker muscular dystrophy.
WithDuchenne muscular dystrophy, an inherited X-linked mutation links the disease to an abnormal X chromosome.
Likewise, daughters have a 50% chance of inheriting the mutated gene.
Medications like corticosteroids can help with improving muscle strength and slow down the progression of the disease.
However, there are resources that can help ease the stress.
It also benefits the caregivers, who can navigate the diagnosis together.
It can even lead to an increased likelihood of having a depressive episode.
Depending on family support and availability of resources, it may be helpful to hire in-home help.
During this period, children feel a desire for independence.
It’s also a time when they can become very self-conscious.
Having a diagnosis like MD can make children feel isolated.
Isolation may be amplified if children are less mobile than their peers and rely on a wheelchair for transport.
However, they are usually not inexpensive.
Some of the pieces of medical equipment that may be helpful include
Other options include accessible homes and vehicles.
Unfortunately, not all of these things are typically covered through medical insurance.
Families may need to participate in fundraisers, reach out to non-profit organizations, or pay out of pocket.
A detailed letter from your childs healthcare provider and other advocacy work can help get equipment approved.
Therapy
Depending on the prescribed amount, occupational and physical therapy can also be costly.
Therapy services can amount to hundreds of dollars per week without insurance coverage.
Parenting a child with MD can present physical, emotional, and financial challenges.
There are support options available to help with your child’s mobility, mental health, and medical expenses.
The life expectancy of children diagnosed with muscular dystrophy can vary.
Depending on the severity of a childs disease, they can lead a similar lifestyle to their peers.
With more mild disease, a child will have more options to lead a more typical lifestyle.
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Abi Daoud MS, Dooley JM, Gordon KE.Depression in parents of children with Duchenne Muscular Dystrophy.Pediatric Neurology.
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