Spinal muscular atrophy (SMA) mainly affects children, but adults can have it, too — about 35 percent of all people with SMA are over 18. Adults with SMA may find it hard to get the specialized medical attention they need because most SMA treatments and support systems are focused on children.

Among adults with SMA, most have SMA type 3 (Kugelberg-Welander disease). This form of SMA is milder and usually appears in late childhood or the teen years. Type 4, also known as adult-onset SMA, is the mildest type of SMA. Because this type of SMA is extremely rare, there’s not a lot of research and information available about the condition. SMA is a neuromuscular disease, which means it affects the nerves and muscles. It often causes muscle weakness and makes it harder to move over time.

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

1. Specialists for Adults Can Be Hard To Find

Doctors still don’t know a lot about how SMA affects adults, even those 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 many of the participants had trouble getting good care and felt that the care they received wasn’t the best.

People unsatisfied with their healthcare said they met doctors and nurses who knew little about SMA. Other adults with stable symptoms of SMA weren’t motivated to seek care. Because of these issues, many adults in the study stopped going to the doctor altogether.

2. Later-Onset SMA Requires Multidisciplinary Care

Children diagnosed with SMA may not always get help moving 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 healthcare, where doctors, therapists, and nurses work together to manage a person’s care.

According to the nonprofit advocacy group Cure SMA, the care plan for SMA looks a little different for adults than it does for children. Adults are more involved in decision-making and more likely to have medical problems involving multiple body systems. Doctors recommend having a care team with one main provider who helps manage everything — from medications and physical therapy to care from specialists like lung, muscle, stomach, and bone doctors.

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 and children. However, a gene replacement therapy known as onasemnogene abeparvovec-xioi (Zolgensma) was approved for children aged 2 or younger with SMA. It works by replacing a missing or faulty SMN1 gene. Scientists are now testing it in clinical trials for older people with SMA to see if it’s safe and effective.

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. Healthcare Needs Change as You Age

Whether or not you take SMA medication, staying connected to your care team can help you stay healthier. An adult healthcare provider can help coordinate physical therapy or connect you with the right specialists.

They can also help you manage health problems that come with aging. Cardiovascular (heart) disease is the leading cause of death worldwide and is often linked to SMA. As you get older, your provider can help make sure you’re getting the care you need — even at hospitals that don’t treat children. Staying involved with your healthcare can help you feel your best as you age.

5. Mental Health Support Is Essential

Your emotional health is just as important as your physical health. Living with SMA can be challenging. A provider who works with adults can help spot signs of depression or anxiety, talk about whether therapy or medication may help, and refer you to a mental health provider if you need one.

Even though it hasn’t always been easy for adults with SMA to get care, the situation is improving. New treatments are being approved, and research is moving forward. 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 2,700 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? How do muscle weakness or other symptoms impact your daily life? Share your experience in the comments below, or start a conversation by posting on your Activities page.