Adults and Spinal Muscular Atrophy

Adults with spinal muscular atrophy (SMA) have the same desire to live and work independently as everyone else. Stereotypes about disabilities often make this difficult.

However, certain laws protect people with SMA. Small adjustments at home and work can also improve independence and accessibility.

Most research on SMA treatments focuses on children with SMA. Disease-modifying drugs are not as helpful for adults as they are for children. We need more research to understand how best to treat SMA in adults.

Spinal muscular atrophy diagnosis during adulthood

The most common types of SMA are diagnosed during childhood. Type 4 SMA is the only major form of SMA that appears during adulthood. This is why type 4 SMA is also called “adult-onset” SMA.¹

Receiving a diagnosis of type 4 SMA can take a long time from when symptoms appear. This is because symptoms of muscle weakness are similar to symptoms of other neuromuscular conditions. Waiting for test results and a diagnosis can be frustrating and stressful.¹

Following an SMA diagnosis, it is common to have a range of emotions. Usually, adults with type 4 SMA show only mild symptoms. However, it is normal to worry about loss of movement and mobility.

Taking care of your mental health is important to reduce anxiety after a diagnosis. Talk to friends and family, support groups, or a therapist to share what you are feeling and find ways to cope.¹

Having a career

Adults with SMA have successful and fulfilling careers. They can work in traditional workplaces or remotely at home. However, stigma and other aspects of the disease can make it harder to find a job.²

Certain laws protect people with SMA in the workplace. The Americans with Disabilities Act (ADA) makes it illegal for employers to discriminate against people with disabilities during hiring, promotion, and other parts of the job. It also requires employers to provide “reasonable accommodations” to make the workplace accessible.^3,4

Specific workplace accommodations will vary for every person with SMA. The key is to communicate often with your employer about what you need to succeed.⁵

Independent living

Adults with SMA live in many different home situations. Many live alone in a home or apartment. Others may live with a partner, family, or roommates.²

Adults with SMA may rely on others for help with daily tasks. It is important to live in a place where you can carry out daily tasks independently and get the medical care you need.²

In some cases, adults with SMA may benefit from home modifications. This may include making doorways and entrances wider, for example. Occupational therapists and building professionals can help with these decisions.²

Many resources are available to help with independent living. Social workers can help advise on what government programs and other resources are right for you.

For example, the Centers for Independent Living provide independent living services for people with disabilities. These community-based programs provide many services, including independent living skills and help with transportation.^6,7

Dating and intimacy

Adults with SMA have happy and intimate relationships with their partners. People with SMA have the same emotional desires for a relationship as everyone else. They can have sex and children if they choose to do so.⁸

However, misconceptions about SMA often affect dating. Adults with SMA often hear that romantic relationships will not be possible for people like them.

Society’s beliefs that people with disabilities are less sexual are incorrect and hurtful. These stereotypes often lead to:⁹

• Low self-esteem in terms of sexuality and relationships
• Low access to sexual education
• Difficulty finding partners and starting families

Finding a partner is often the first challenge for adults with SMA. Online dating has helped people connect more easily than in the past. But meeting people online makes it difficult to know when and how to tell potential partners about SMA.⁹

Treatment as an adult

The focus of SMA research and advocacy tends to be on children. This is because childhood SMA types are more common and severe. Because of this, many adults with SMA feel their needs are not met by healthcare services. Some challenges adults with SMA face in their care often include:^10,11

• Transitioning from pediatric to adult care
• Finding specialists and clinics for adults
• Finding financial assistance for equipment
• Being undervalued by the healthcare system
• Lack of support from society
• Relying on family and friends for support
• Access to mental health services

Plus, there are mixed results on the benefits of approved treatments in adults. SpinrazaⓇ (nusinersen) and Evrysdi™ (risdiplam) are approved for use by adults.

They seem to improve motor functioning but are not as life-changing as for infants and children. Clinical trials are ongoing to test the benefits of these drugs in adults with SMA.^12-15