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Muscular Dystrophy

Muscular dystrophy is a group of more than 30 genetic diseases that weaken the muscles over time. Some types also affect the heart and breathing. There is no cure, but steady care from a specialist team — and, for Duchenne, newer medicines — can protect health, independence and quality of life.

Get urgent medical help for breathing trouble, fainting, chest pain or a racing, pounding or very slow heartbeat. Breathing problems are a major cause of illness and death in Duchenne muscular dystrophy (Birnkrant et al., Lancet Neurology, 2018). In myotonic dystrophy type 1, palpitations, chest pain, shortness of breath and fainting need a heart check, and serious heart problems often cause no symptoms first (Ashizawa et al., Neurol Clin Pract, 2018).

Watch for signs of breathing trouble during sleep: morning headaches, frequent waking, very hard waking, daytime sleepiness, trouble concentrating and frequent nightmares can be signs of shallow breathing at night (Birnkrant et al., 2018). Tell the care team promptly. In Duchenne, oxygen should not be used on its own, only together with breathing and cough support (Birnkrant et al., 2018).

Before any surgery, sedation or dental procedure, tell every clinician about the muscular dystrophy. The muscle relaxant succinylcholine has caused sudden cardiac arrest and death in children later found to have an undiagnosed muscle disease, most often Duchenne (FDA-approved label, DailyMed). In Duchenne and Becker, inhaled anesthetics can rarely trigger a reaction like malignant hyperthermia, with muscle breakdown, sometimes after surgery (Gurnaney et al., Anesth Analg, 2009). In myotonic dystrophy, serious reactions to anesthesia and opioid pain medicines can happen even when symptoms are mild, and most occur after the operation (Ashizawa et al., 2018). See our Anesthesia & Surgery Recovery guide.

If you or your child takes steroids, never miss doses, and get immediate medical help if there are signs of adrenal crisis, such as unusual sluggishness during a fever, vomiting, surgery or other physical stress (Birnkrant et al., 2018). After a broken bone, shortness of breath or confusion can signal fat embolism, which has caused deaths in boys with Duchenne (Birnkrant et al., 2018, Birnkrant et al., 2018). Carry an emergency card and recent test results to the emergency room (Birnkrant et al., 2018).

What is muscular dystrophy?

Muscular dystrophy (MD) is a group of more than 30 genetic diseases that cause weakness and breakdown of the muscles used for movement. All types get worse over time, and many people eventually lose the ability to walk (NINDS). Some types also affect the heart, lungs, digestive system, glands, spine, eyes or brain. MD is not contagious (NINDS).

MD can run in families, or a person can be the first in the family to have it, and even people with the same type can have different symptoms (MedlinePlus). Changes in more than 40 genes are known to cause muscular dystrophies (CDC). There is currently no cure, but treatment can help with symptoms (NHS).

The main types

  • Duchenne (DMD) — the most common childhood form. It is caused by a missing muscle protein called dystrophin and mainly affects boys, although girls who carry the gene may have some symptoms (NINDS). About one in every 3,300 boys is affected, and symptoms often begin between 3 and 6 years of age (FDA). Many people with DMD now live into their 20s or 30s (NINDS).
  • Becker — caused by changes in the same gene, but milder and slower (MedlinePlus Genetics). It usually appears around age 11 but can start as late as 25, and people usually live into middle age or later (NINDS). Both Duchenne and Becker can weaken the heart muscle (cardiomyopathy), typically beginning in the teens (MedlinePlus Genetics).
  • Myotonic dystrophy — the most common form that begins in adulthood. People may have trouble relaxing a muscle after using it, such as letting go of a doorknob, along with cataracts, heart rhythm problems and sometimes diabetes (MedlinePlus Genetics). In type 1, it tends to start earlier and be more severe as it passes down the generations, and a congenital form causes weak muscle tone, clubfoot and breathing problems at birth (MedlinePlus Genetics).
  • Facioscapulohumeral (FSHD) — first weakens the face, the muscles around the shoulder blades and the upper arms, often more on one side. It usually appears in adolescence and worsens slowly over decades; about 20 percent of people eventually use a wheelchair (MedlinePlus Genetics). Most people with FSHD have a normal life span (NINDS).
  • Limb-girdle (LGMD) — a group of diseases weakening the shoulders, upper arms, hips and thighs. Some people develop heart muscle weakness or breathing problems (MedlinePlus Genetics).
  • Congenital MD — present at birth or before age 2. Most children with it cannot sit or stand without support, and some may never walk; some types also affect the brain, causing seizures or vision and speech problems (NINDS).
  • Rarer types include Emery-Dreifuss, where nearly everyone has a heart problem by age 30; distal MD, starting in midlife in the hands and feet; and oculopharyngeal MD, with drooping eyelids and trouble swallowing from the 40s or 50s (NINDS, CDC).

Signs at different ages

CDC reports that a Duchenne diagnosis came about 2.5 years after parents first noticed motor delay (CDC). If you’re worried, see a doctor; if MD runs in either partner’s family, a doctor can refer you to a genetic counselor before or during pregnancy (NHS).

How MD is diagnosed

Breathing and heart monitoring

Side by side

Six approaches compared

For every condition we look at the same six approaches: what each involves, what it typically costs, and what a patient can realistically expect.

ApproachWhat it involves Estimated costWhat to expect
Conventional medicine (AMA) A specialist team: steroids and, for Duchenne, FDA-approved medicines (exon-skipping drugs for certain gene changes, a nonsteroidal drug and a gene therapy now limited to walking patients after liver deaths); heart and breathing care; bone, spine and orthopedic care; physical, occupational and speech therapy; braces and wheelchairs. Early intervention is free or reduced-cost for eligible children; Medicaid EPSDT covers medically necessary care for enrolled children under 21; with Medicare, you pay 20% of the approved amount for therapy and wheelchairs after the deductible. Genetic tests, specialist care and medicines: cost estimate being researched. No cure. Steroids improve strength and function in Duchenne in the short term; anticipatory heart and breathing care can prolong survival. Newer Duchenne drugs have serious warnings and some still need confirmatory trials.
Chiropractic No role. We found no studies of chiropractic care for muscular dystrophy, only one 1987 case report. About $55–$100 per self-pay follow-up visit and $90–$200 for a first visit, but we don’t recommend it for MD. Not a treatment for MD. Weak, steroid-treated bones fracture easily, and spine fractures are often silent, so spinal manipulation is a real safety concern.
Acupuncture Little research: three single-patient case reports (Duchenne, myotonic dystrophy, FSHD) and no controlled trials. About $125–$230 for a first private visit and $90–$185 for follow-ups; community clinics about $50–$90. Unproven. If you try it for comfort, use a licensed acupuncturist, tell your team, and don’t let it replace care.
Herbal medicine No herb or supplement has been shown to slow MD. Creatine modestly increased strength in trials; antioxidant and CoQ10 results are small or mixed. A pilot of Chinese herbal remedies in Duchenne found little if any benefit. Not applicable. Use supplements only with your neuromuscular team’s agreement, especially with steroids, heart medicines or upcoming surgery. We don’t list doses.
Massage therapy Gentle massage for comfort and muscle tightness, alongside — not instead of — the stretching program from your therapists. One national chain’s membership runs about $70–$90 a month for one 60-minute session. Massage taught by your therapist for home use: free. One small study in boys with Duchenne found calf massage safe, with small gains in muscle length and less stiffness. Avoid deep or vigorous pressure on fragile bones.
MBHA Wellness Coach Daily-life support: keeping up home stretching, safe activity such as swimming, weight and nutrition, vaccines, steroid and emergency plans, falls and car safety, school plans and caregiver rest. Cost estimate being researched. Early intervention, Parent Centers and school evaluations are free. Supports — never replaces — the neuromuscular team.

Approach 1 of 6

Conventional medicine (AMA)

Treatments aim to keep people independent for as long as possible and to prevent complications (NINDS), usually through a team of specialists (NHS). We name medicines but never doses.

1. Steroids

2. FDA-approved Duchenne medicines

These treat Duchenne only. Ask your neuromuscular specialist which, if any, fits the exact gene change.

  • Exon-skipping drugs help muscle cells make a shortened but working form of dystrophin (NINDS). Each works only for certain gene changes: eteplirsen (Exondys 51, first approved in 2016) for exon 51 skipping (DailyMed); golodirsen (Vyondys 53, 2019) and viltolarsen (Viltepso, 2020) for exon 53 (DailyMed, DailyMed); and casimersen (Amondys 45, 2021) for exon 45 (DailyMed). All four have accelerated approval based on an increase in dystrophin, and continued approval may depend on confirmatory trials showing clinical benefit. Label warnings include allergic reactions and, based on animal studies, possible kidney toxicity.
  • Givinostat (Duvyzat), approved in March 2024 for ages 6 and up, is the first nonsteroidal drug approved for all genetic variants of Duchenne. In an 18-month trial in which everyone also took steroids, it slowed the decline in stair-climbing time. Common side effects include diarrhea, belly pain, low platelets, nausea, raised triglycerides and fever, and it can prolong the QTc interval, which raises the risk of irregular heartbeats (FDA, Duvyzat label, DailyMed).
  • Delandistrogene moxeparvovec (Elevidys) is a one-time gene therapy that delivers a gene for a shortened “micro-dystrophin”. It received accelerated approval in June 2023 for ages 4 to 5 (FDA); in June 2024 the FDA gave traditional approval for walking patients 4 and older and accelerated approval for non-walking patients, although the main trial had missed its primary goal (FDA).

Elevidys safety action. In June 2025 the FDA reported two deaths from acute liver failure in non-walking boys treated with Elevidys (FDA); a third death occurred in an adult with limb-girdle MD who received a related investigational gene therapy in a trial (FDA). In November 2025 the FDA added a boxed warning for serious liver injury and acute liver failure, including deaths, and limited Elevidys to patients 4 and older who can walk (FDA). Weekly liver tests are advised for at least three months, and patients should stay near an appropriate medical facility for at least two months. Contact the care team immediately for yellowing of the skin or eyes, missed or vomited steroid doses, or a change in mental state (FDA). The label also warns about serious infections, heart muscle inflammation (myocarditis) and severe muscle inflammation in people with certain gene deletions (Elevidys label, DailyMed, FDA).

For other types, NINDS notes medicines that ease symptoms such as myotonia, and clinical trials are under way in myotonic dystrophy, FSHD and other forms (NINDS). In myotonic dystrophy type 1, mexiletine probably shortens grip relaxation time, though no trial showed benefit on validated myotonia scales (Spillane et al., Cochrane review, 2025). There is no effective medicine for FSHD itself, but surgery to fix the shoulder blade may be offered to selected patients (Tawil et al., 2015).

3. Heart care

For Duchenne, an NHLBI expert group recommended starting heart medicines (ACE inhibitors or ARBs) by age 10, with other heart failure medicines added when problems appear (Birnkrant et al., 2018). Trial evidence that these medicines help is of very low certainty (Bourke et al., Cochrane review, 2018).

4. Breathing care

Anticipatory breathing care — lung volume exercises, assisted coughing, then breathing support at night and later during the day — can reduce complications and prolong survival in Duchenne. Yearly injectable flu vaccines and pneumococcal vaccines are recommended (Birnkrant et al., 2018). Assisted ventilation is often needed in later stages of many types (NINDS).

5. Rehabilitation, braces and equipment

  • Physical therapy keeps muscles as flexible and strong as possible; passive stretching helps prevent contractures (tight, shortened joints); occupational therapy helps with daily tasks; and speech therapy helps with weak face and throat muscles (NINDS).
  • For Duchenne, rehabilitation checks are advised at least every 4 to 6 months for life. Daily home stretching should begin soon after diagnosis, with splints, braces, standing devices and custom seating as needed (Birnkrant et al., 2018). No randomized trials of standing devices in Duchenne exist yet (Pedlow et al., Cochrane review, 2019).
  • Many people eventually need mobility equipment such as a wheelchair, plus home changes like stair lifts or railings (NHS). Our Wheelchair Users guide is coming soon.
  • Surgery can release tight tendons, correct scoliosis that causes pain or imbalance, and remove cataracts (NINDS). See our Osteoporosis guide; a Scoliosis guide is on the way.

6. Swallowing and nutrition

Some people with MD develop swallowing problems and may need special feeding techniques; no diet or supplement has been shown to slow MD, but eating well supports overall health (NINDS).

What it costs

  • Early intervention is free or reduced-cost for eligible young children (CDC).
  • Medicaid EPSDT covers children under 21 enrolled in Medicaid, including any coverable service that is medically necessary to treat or improve a condition (Medicaid.gov).
  • Medicare covers physical therapy to maintain function or slow decline, with no yearly limit on medically necessary therapy (Medicare.gov), and covers wheelchairs and scooters for eligible people; for both you pay 20 percent of the approved amount after the Part B deductible (Medicare.gov).
  • Genetic testing, specialist visits, braces and the Duchenne medicines: cost estimate being researched.

What to expect

MD is lifelong and, depending on the type, can affect how long a person lives; your care team can explain what to expect (NHS). Better health care has extended life expectancy and quality of life for people with Duchenne (NINDS).

Find a medical doctor in our directory

Approach 2 of 6

Chiropractic

Chiropractic care has no established role in muscular dystrophy. A PubMed search in October 2026 for chiropractic or spinal manipulation and muscular dystrophy found three records: two unrelated to MD, and a 1987 chiropractic case report on one person with myotonic dystrophy (Zahid & Washington, J Manipulative Physiol Ther, 1987). We found no trials.

Fragile bones are a real safety concern. Long-term steroids and weak muscles both weaken bone in Duchenne. Fractures of the spine are common and often cause no symptoms, and leg fractures can end walking permanently (Birnkrant et al., 2018). Serious problems after spinal manipulation are very rare, but people with underlying health problems may be at greater risk (NCCIH).

  • Back pain in someone taking steroids should prompt a check for spine fractures (Birnkrant et al., 2018) — a medical visit, not an adjustment.
  • MBHA’s advice: do not have spinal manipulation if you have MD and take steroids, have had a fracture or have thin bones, unless your neuromuscular specialist agrees.

What it costs

For reference, self-pay follow-up visits typically cost about $55–$100 and a first appointment about $90–$200 (The Pricer).

Find a chiropractor in our directory

Approach 3 of 6

Acupuncture

We found little research on acupuncture for muscular dystrophy. A PubMed search in October 2026 found no controlled trials, only single-patient case reports.

What the research says

Single cases can’t show whether a treatment works.

Safety

Relatively few complications have been reported, but problems have come from non-sterile needles and improper treatment; in the U.S., needles must be sterile and single-use (NCCIH). Choose a licensed acupuncturist, tell your neuromuscular team, and keep up your regular care.

What it costs

Published examples run about $125–$230 for a first private visit and $90–$185 for follow-ups; community clinics about $50–$90 a visit (The Pricer).

Find an acupuncturist in our directory

Approach 4 of 6

Herbal medicine

No dietary supplement, specific food or diet has been shown to slow the progression of MD (NINDS). Still, in one Australian clinic 65 percent of families of boys with Duchenne or Becker used supplements (de Valle et al., J Pediatr Rehabil Med, 2016).

What the research says

Safety first

  • Supplements can interact with medicines, may affect your response to anesthesia, and many have not been tested in children; “natural” does not always mean safe (NCCIH).
  • Hidden steroids are a special worry for someone already on prescribed steroids. Bring every bottle to clinic and use supplements only with your neuromuscular team’s agreement. We don’t list doses.

Approach 5 of 6

Massage therapy

Massage is one of the complementary therapies families use most for Duchenne and Becker (Zhu et al., Pediatr Neurol, 2014, de Valle et al., 2016), and the 2018 Duchenne care considerations include manual therapy techniques in preventing contractures (Birnkrant et al., 2018).

What the research says

Safety

The risk of harm from massage appears low, but rare serious problems, including bone fractures, have been reported, some with vigorous deep tissue massage (NCCIH). Because steroids and MD weaken bones (Birnkrant et al., 2018), ask for gentle pressure only, avoid forceful stretching or twisting, and ask your physical therapist to show family members safe techniques.

What it costs

At one national chain, memberships run about $70–$90 a month for one 60-minute session (The Pricer). Massage a therapist teaches you to give at home is free.

Find a massage therapist in our directory

Approach 6 of 6

MBHA Wellness Coach

An MBHA Wellness Coach can help with the daily habits that support care — alongside, never instead of, the neuromuscular team.

Stretching and safe activity

Health routines

School and services

Caring for caregivers

Caregiver fatigue is real; experts suggest planning respite and hired help from the teenage years (Birnkrant et al., 2018). A coach can help you share care and protect time for your own rest.

Another approach

Questions to ask your care team

These questions can help you make the most of appointments:

Member stories

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Sources

This page is for education only and is not medical advice. Costs are typical U.S. ranges and estimates; yours will depend on your provider, location and insurance. Talk with your doctor before starting, stopping or combining any treatment. In an emergency, call 911. See our disclaimer.

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