Spinal muscular atrophy (SMA) mainly affects children, but it doesn’t spare adults — 35 percent of all people with SMA are over 18. These adults often find it hard to get the specialized medical attention they need, because most SMA treatments and support systems are geared toward children.

Among adults with SMA, most have SMA type 3 (Kugelberg-Welander disease). This type is milder and usually appears in late childhood or adolescence. Type 4, also known as adult-onset SMA, is the mildest type of SMA. Because type 4 is an extremely rare form of SMA, there’s not a lot of research and information available about the condition.

Keep reading to learn about the differences in SMA treatment for adults and children.

1. Specialists for Adults Can Be Hard To Find

Doctors don’t fully understand how adults are affected by this motor neuron condition, even among adults with the more common type 3 SMA. A small study published in the Orphanet Journal of Rare Diseases focused on 25 adults or family members of adults with type 3 SMA in Australia. Researchers found that these participants often faced major gaps in health care and perceived low value for the health care they received, meaning they felt that the care they received wasn’t the best.

People unsatisfied with their health care said they met doctors and nurses who knew little about SMA. Other adults with stable symptoms of SMA weren’t motivated to seek care. For these reasons, many participants stopped using the health care system.

2. Later-Onset SMA Requires Multidisciplinary Care

Children diagnosed with SMA may not be an effective program to support their transition from pediatric to adult care. Finding and getting to a specialist or clinic that offers multidisciplinary care for adults with SMA can be difficult. Multidisciplinary care is a team approach to health care, where doctors, therapists, and nurses work together to manage a person’s care.

According to the nonprofit advocacy group Cure SMA, the recommended standard of care for SMA differs in some ways between adults and children. Adults are more involved in decision-making and more likely to experience medical problems involving multiple body systems. Health experts recommend that both adults and children with SMA have a multidisciplinary health care team, including a central provider who coordinates medication, acute care, physical therapy, and specialists in neuromuscular, pulmonary, gastrointestinal, and orthopedic care.

3. Adults Have Fewer Approved Treatment Options

Nusinersen (Spinraza) and risdiplam (Evrysdi) are the only U.S. Food and Drug Administration (FDA)-approved medications for the treatment of SMA in adults as well as children. However, a gene replacement therapy known as onasemnogene abeparvovec-xioi (Zolgensma), which works by replacing a missing or defective gene, was approved for babies with SMA and is now being tested in phase 3 trials for adults. These phase 3 trials assess the safety and effectiveness of this new treatment in a larger group of people.

Researchers are beginning to focus on finding effective treatments for adults living with SMA. There are several other clinical trials — recently completed, ongoing, or planned — to study the safety and effectiveness of new treatments in adults with SMA.

4. Health Care Needs Change as You Age

Whether or not you decide to take medication for SMA, staying involved with your care can help you live a healthier life. An adult health care provider can act as a care coordinator, making referrals for physical therapy or other supportive care services and connecting you with specialists as needed.

An adult health care provider who understands SMA can also help navigate the aging process, screening for diseases that become more common as people get older. For instance, cardiovascular disease is not only the No. 1 cause of death around the world but is frequently a related condition in SMA. As the needs of an adult with SMA change, a health care provider for adults can help coordinate with specialists or admit them to nonpediatric hospitals if necessary. Staying involved with your health care can help you feel your best as you age.

5. Mental Health Support Is Essential

Psychological health is also important — one study found a connection between emotional distress and health-related quality of life in people with SMA. A provider who treats adults with SMA can help identify depression or anxiety, discuss whether therapy or medication may help, and refer you to a mental health provider if you need one. Cure SMA offers a Find a Location search in the U.S. with an “adult site” option.

Despite the challenges many adults with SMA have faced in getting medical help, treatment for SMA is rapidly improving as new therapies are approved and more research is carried out. As these treatments become available, more people are likely to get the help they need.

Talk With Others Who Understand

On mySMAteam, the social network for people with SMA and their families and caregivers, more than 2,400 members come together to ask questions, give advice, and share their stories with others who understand life with SMA.

Have you had problems finding medical care as an adult with SMA? Share your experience in the comments below, or start a conversation by posting on your Activities page.