Complementary and Alternative Medicine

Treatment of spinal muscular atrophy (SMA) should focus on therapies with proven clinical benefit. This includes disease-modifying treatments that have been approved by the U.S. Food and Drug Administration (FDA). It also includes physical therapy and breathing support. This improves quality of life and reduces complications.

Complementary and alternative therapies may have some health benefits for people with SMA. This includes dietary supplements, traditional practices, and natural remedies. However, there is limited or no clinical evidence that they work. Talk to your doctor before using any alternative medicine methods.

What is alternative medicine?

Complementary and alternative medicine consists of treatments outside of standard “Western” practices. They range from natural herbal remedies to traditional practices. These therapies may show unproven health benefits in case studies. However, there is often no scientific basis to explain how they work. And there is rarely clinical trial evidence to show they actually work.¹

Experts agree that alternative medicine will not cure or provide long-term treatment for SMA. Treatments with scientific and clinical evidence should be the main focus. However, alternative medicine techniques are still commonly used alongside standard treatments. These therapies may provide temporary pain relief and other benefits.¹

What alternative medicines are used in SMA?

Some alternative therapies may reduce pain, joint contractures, or fatigue. Talk to your doctor about any treatments you are interested in. They can discuss whether the potential benefits outweigh the risks.

Osteopathy

Osteopaths are doctors who treat disease through massaging of bones, joints, and muscles. Osteopathy can treat lower back pain and osteoarthritis.¹

People with severe types of SMA often develop scoliosis. Osteopathic treatments may be able to reduce the progression of scoliosis. However, studies have not shown that osteopathy can slow its progression.²

Supplements

Supplements are substances that may add nutrients to your diet or lower the risk of health problems. Experts have considered a range of nutritional supplements to treat SMA. This is based on evidence that people with SMA have low levels of certain nutrients. These nutrients are important for bone density and include:^3-5

• Vitamins A, D, E, and K
• Folate
• Calcium
• Magnesium
• Iron
• Fatty acids

Other supplements that may help people with SMA include:⁶

• Fiber to reduce constipation
• Probiotics to improve gut health
• Creatine to improve muscle mass

However, there is not yet any evidence that any of these supplements treat symptoms of SMA. The only clinical trial on creatine and SMA found it did not improve motor function, muscle strength, lung function, or quality of life.^4,7

Always talk with your doctor before taking any supplements.

Ayurveda

Ayurveda is an alternative medicine system that originated in India more than 3,000 years ago. The name translates to “knowledge of life.” It encourages lifestyle interventions and natural therapies to regain a balance between the body and mind. This includes diet changes, herbal remedies, massage, yoga, and meditation.⁸

Ayurvedic experts are not licensed in the United States, and there is no standard for certification. Many materials used in Ayurveda have not been well studied. Some products may contain herbs, metals, or other materials that can be harmful.⁸

Case studies have described the benefits of Ayurveda in SMA. But there is no scientific or clinical evidence that Ayurvedic treatments work in any disease, including SMA. It may have positive effects when combined with standard medicine. However, it also can work against the effect of standard treatments. It should never replace standard healthcare.⁸

Cannabidiol (CBD)

CBD is an active ingredient in cannabis (marijuana). It is also derived from hemp, which is a closely related plant to marijuana. Although CBD is a component of marijuana, it does not cause a “high.”⁹

The CBD-based drug EpidiolexⓇ (cannabidiol) is approved by the FDA to treat seizures associated with three different conditions. Clinical research has investigated CBD to treat anxiety and pain. CBD may reduce pain for people with SMA. However, there is not yet any clinical evidence of this. As of now, the FDA considers CBD a dietary supplement. This means it does not regulate the safety or purity of CBD.^9,10

The current laws surrounding CBD are also confusing. However, CBD is still available in most parts of the United States. Experts expect its legality and availability to increase.⁹

Natural remedies

Many other herbal remedies and natural extracts have been suggested to improve symptoms of SMA. The potential benefits are usually based on lab experiments with animal models of SMA. There is not yet clinical evidence of these benefits in people.¹¹

One example is a chemical called quercetin. Quercetin is a naturally occurring antioxidant in many fruits and vegetables. In animal models of SMA, it works in different ways to help motor neurons survive.^12-14