Muscular Dystrophy Life Expectancy

The life expectancy for a person with muscular dystrophy (MD), a genetic disease that affects the muscles, depends on which type they have. Some people live a full life with muscular dystrophy. Others, including those diagnosed with Duchenne muscular dystrophy (DMD), typically have lived into their teens and 20s.

Related heart disease is the leading cause of death for people living with MD. There are no treatments to stop the progression of muscular dystrophy. The goal is to manage symptoms and help a person to live well with the condition.

This article explains the different types of MD and why muscular dystrophy life expectancies vary so much. It will help you to know more about what to expect if you or a loved one receive an MD diagnosis.

Duchenne Muscular Dystrophy Life Expectancy

The life expectancy for a person with DMD is from the age of 16 to the early 20s. Some people can live longer if the disease starts later or if complications of the condition like cardiomyopathy (affecting heart muscle) are not severe.

Life expectancy with DMD also may be longer with at-home ventilation, which became more available in recent decades. Some researchers identify mechanical ventilation as the reason why people diagnosed with DMD may now live into their fourth decade. Treatment guidelines are evolving to meet the needs of people with DMD who are living longer.

DMD is the most common type of muscular dystrophy. The first symptoms of DMD show up in children between age 2 and 6. Because this type of muscular dystrophy is progressive, many people with DMD use a wheelchair by the age of 12 or 13.

Becker Muscular Dystrophy Life Expectancy

The life span for people with Becker muscular dystrophy (BMD) tends to be longer than it is for people with DMD. Some people with BMD live into their 30s or 40s.

BMD is similar to DMD but the symptoms are less severe. BMD symptoms also tend to start later in life, and people with BMD usually have better outcomes than people with DMD.

The most common complications of BMD are heart diseases like cardiomyopathy and problems with heart rate or rhythm (arrhythmias).

Congenital Muscular Dystrophy Life Expectancy

The life expectancy for people with congenital muscular dystrophies can vary, with much depending on the specific genetic disorder that is inherited.

The congenital muscular dystrophies are a collection of disorders that are present at birth along with other genetic disorders. Researchers continue to identify genes involved with MD and know of at least 35 to date. Gene therapy for MD may prove to be a treatment in the future.

While a person with congenital muscular dystrophies may have muscular dystrophy symptoms such as weakness, the symptoms usually do not progress throughout their life.

Distal Muscular Dystrophy Life Expectancy

Distal muscular dystrophy may not reduce a person's lifespan because the symptoms sometimes develop when they're older and affect vastly different body parts. In these cases, the impacts of what is really a collection of MD types are not always fatal.

These disorders affect the hand and muscles of the arm, and the feet and lower legs. Different types also affect vocal cords in the throat, affect neck or facial muscles, or cause severe gait problems that can lead to scoliosis in young people.

Researchers continue to learn more about the genetic mutations that lead to distal MD disorders.

Emery-Dreifuss Muscular Dystrophy Life Expectancy

The life expectancy for a person with Emery-Dreifuss muscular dystrophy depends on how much their heart has been damaged by the condition.

Emery-Dreifuss muscular dystrophy affects the muscles for movement and the heart muscle. The heart is the most affected muscle and often develops arrhythmias.

The symptoms of Emery-Dreifuss muscular dystrophy show up in adulthood and can include an unusually slow heartbeat or fainting. The treatments for Emery-Dreifuss muscular dystrophy are focused on supporting a person's heart function. As with other MD types, there's an eye toward promising genetic therapies in the future.

Facioscapulohumeral Muscular Dystrophy Life Expectancy

Facioscapulohumeral muscular dystrophy (FSHD) does not necessarily reduce a person's life expectancy. While further study is needed, the prognosis is based on:

• Age and gender when symptoms started (often less mild in people assigned male)
• Family history
• Severity of the symptoms
• Specific genetic mutations identified with FSHD1 and FSHD2

FSHD is a complex genetic disorder. It is the third most common muscular dystrophy and affects the muscles in the face, clavicle, shoulder, and legs.

Limb-Girdle Muscular Dystrophy Life Expectancy

Limb-girdle muscular dystrophy does not have a significant effect on life expectancy.

Limb-girdle muscular dystrophy mostly affects the muscles of the hips, pelvis, and shoulders. The age when symptoms begin can vary. Children may have symptoms starting around the age of 10 but it can also show up in adults at around the age of 30.

There are many variants of limb-girdle muscular dystrophy. Some people have symptoms that get worse throughout their life.

Oculopharyngeal Muscular Dystrophy Life Expectancy

In rare cases, the muscles in a person's throat can be affected by MD. The diagnosis of oculopharyngeal muscular dystrophy (OPMD) usually happens after symptoms start in adulthood, between the ages of 40 and 60, and get progressively worse over time.

Oculopharyngeal muscular dystrophy affects the muscles that control eye movement and the muscles that help with swallowing.

People with OPMD may first notice a drooping eyelid. They have difficulty swallowing when eating or drinking. Weakness in the facial muscles is common. Muscle weakness in the arms and legs causes up to 10% of people living with OPMD to need a wheelchair.

Life expectancy is not greatly affected by OPMD because complications of swallowing only become severe later in life. Treatment options have been limited but include surgical procedures and Botox injections.

Tibial Muscular Dystrophy Life Expectancy

A person with tibial muscular dystrophy (sometimes called Udd myopathy) can expect to live a full life because it usually shows up at a later age than other forms of muscular dystrophy. That said, findings from gene research suggest some variants are linked with cardiomyopathy.

Tibial muscular dystrophy affects the muscles in the lower leg near the shins. The symptoms usually start after the age of 35 but they will progressively affect a person's ability to walk.

Myotonic Muscular Dystrophy Life Expectancy

Myotonic muscular dystrophy (DM) has two variants that affect life expectancy differently.

• In type 2 DM, the symptoms are usually mild and start in adulthood, so a person's lifespan is not affected much.
• Children born with congenital type 1 DM have shortened life expectancies and may only live into their 20s.

Myotonic muscular dystrophy causes muscle weakness. It also makes a person unable to relax those muscles. The disorder is more commonly diagnosed in adults, but some babies are born with it.

Summary

People with muscular dystrophy may have shorter-than-average lifespans, but it depends on which type they have and how severe the disease is.

• Duchenne muscular dystrophy is the most common type of muscular dystrophy. The life expectancy for this type is around the ages of 16 to the early 20s.
• Becker muscular dystrophy has a higher life expectancy, usually into the 30s or 40s.
• Some muscular dystrophies, such as congenital, Emery-Dreifuss, and myotonic, affect life expectancy in different ways depending on how severe they are.
• Other muscular dystrophies, like distal muscular dystrophy, FSHD, limb-girdle, OPMD, and tibial, do not affect life expectancy as much.

Be sure to work with your healthcare team to better understand the diagnosis and treatments. It will help to ensure that you and your loved ones live well with the form of muscular dystrophy involved.