Building a multidisciplinary team of health care professionals to manage your or your child’s spinal muscular atrophy (SMA) is an important part of making sure that you have the best possible care and quality of life. SMA is a complex condition requiring a team approach. Depending on the type of SMA you (or your child) have, you may require different levels of care. This article discusses the team members you might need to support you and your family.
Spinal muscular atrophy causes loss of function in skeletal muscle, the type of muscle used in voluntary movement, which is found throughout the body. Because skeletal muscle is an important part of different bodily functions, including breathing, eating, and walking, both the causes and the various symptoms of SMA are treated by health care professionals from a wide range of specialties. Some of the types of doctors, physician assistants, and nurse practitioners who treat SMA include:
Some of the allied health professionals who treat SMA include:
The types of medical specialties needed to treat SMA depend on a person’s individual needs based on their age and specific symptoms, and the severity of their condition.
The primary treatment for SMA is disease-modifying therapy that targets the cause of SMA. However, long-term management of SMA requires a variety of treatments to alleviate symptoms and to improve and maintain function. The medical specialists who treat SMA each have a role in addressing a wide range of physical symptoms, including those related to breathing, eating, and movement and mobility.
SMA can weaken the muscles used for respiration (breathing) and prevent the body from growing to accommodate normal lung function. Respiratory support is essential for many people with SMA. They frequently need help breathing using either noninvasive respiratory management (such as bilevel positive airway pressure, also called BiPAP) or invasive respiratory treatment (such as a mechanical ventilator). People with lung or breathing disorders are usually treated by a pulmonologist (a lung specialist), along with respiratory therapists and speech pathologists.
Respiratory therapy is important in SMA for people who cannot cough, to help them clear mucus from their airways. Speech pathologists can help people learn how to breathe better by teaching breathing techniques. Ear, nose, and throat doctors (ENTs or otolaryngologists) may perform a tracheostomy (creating a hole, or stoma, in the windpipe to help breathing). Orthopedic surgery can also address breathing issues by treating scoliosis, a curvature of the spine that prevents the chest from growing normally.
SMA can weaken muscles needed to feed yourself or muscles needed to chew and swallow food. This can make it physically difficult to eat and to get proper nutrition. Dietitians can help people find the best diet to meet their physical needs. This can include eating a high-protein diet, switching to foods that are easier to swallow, and using dietary supplements.
Feeding tubes to help you get the nutrition you need can be placed in your stomach through your nose (nasogastric tube, also called an NG tube) or through your abdomen (G tube). Physical therapy can help maintain strength and range of motion required to feed yourself. Speech pathologists and occupational therapists can help you learn how to safely eat and use assistive devices to make it easier to feed yourself.
SMA can cause muscle weakness, loss of range of motion, and joint problems. Physical therapy can help you build strength, maintain range of motion, prevent contractures (tightening), and improve mobility through exercise. Occupational therapy can help you learn how to perform tasks of daily living with impaired movement. Orthopedic surgeons can help treat damaged joints, correct scoliosis, and perform spinal fusions to improve balance and function. Podiatrists can treat foot problems — even something as simple as cutting your toenails can be difficult or impossible with limited mobility.
A complete medical support team may include other roles. Social workers and clinical case managers can help coordinate medical appointments, arrange transportation, obtain medical devices (including wheelchairs and adaptive devices), find clinical trials, and help find financial support for medication. Home health nurses can help you with medical needs, as well as activities of daily living. A psychologist can help people with SMA and their caregivers cope with the stress of living with SMA.
Many children’s hospitals, academic hospitals, and health care systems across the United States have put together teams of medical specialists to provide coordinated care for people with SMA and muscular dystrophy. If you live near a city with an SMA treatment center, you may not have to build your medical support team from scratch.
Multidisciplinary treatment centers can coordinate care across specialties and maintain continuity of care when changing health care providers. Travel to reach an SMA treatment center can be expensive. Depending on your needs, you may consider moving or relocating to an area that is closer to an SMA treatment center to make sure that you can get the best possible care for yourself or your family.
When putting together your medical support team, be sure to ask lots of questions. If possible with your insurance plan, you may want to shop around for the best health care providers you can find. Because SMA requires lifelong medical treatment, do your best to find health care that you are satisfied with.
You do not have to do this work on your own. Organizations like Cure SMA and Muscular Dystrophy Association offer resources and support for people with SMA. The SMA Foundation provides links to organizations around the world.
SMA is a rare disease, so it may be difficult to find doctors and other medical professionals near you who have experience treating people with SMA. Don’t be afraid to ask your health care providers if they have experience with SMA or similar neuromuscular diseases. You can also ask them if they have any recommendations for health professionals in your area who have experience with SMA.
It is important to be satisfied with the care you receive. Having a good relationship with your health care team can help you reach your treatment goals and keep up with your treatments, especially when things get difficult. Find support team members who listen to you and who you trust enough to listen to.
Every team needs a leader, and that leader is you. Whether you have SMA or you are the parent or caretaker of someone with SMA, you are the best person to make sure you get the care you need for yourself or your loved one. Everyone involved in your care has a role to play, but ultimately it is up to you to make sure your voice is heard and your needs are being met.
Communication is an essential part of teamwork. Communication between you and your health care providers is key to understanding how SMA is affecting you and your needs. The various health care providers involved in managing SMA must also communicate to make sure that everyone has the information they need to make the best possible decisions.
Sharing information, such as test results, prescriptions, and diagnoses, can prevent duplicating tests, medications, and treatments. It can also prevent misdiagnosis and improper treatment. Electronic medical records and digital imaging make communication between health care providers easier today than in the past, but some providers may not have access to all of the medical information they need.
Keep a list of the doctors and other people involved in your SMA treatment. Include their names and contact information to share with the members of your team, so they can communicate when needed. Another recommendation for improving communication is to keep track of medications, medical appointments, and treatments. Share this information with members of the medical support team. Not only does this help you stay informed, but it also helps others keep track of your condition and shows that you are involved in your care.
One of the most important aspects of communication is honesty, especially when it comes to telling your doctor about your symptoms, progress in therapy, medications, and side effects. An important example of this is being honest about taking prescribed medications. For example, if you say you are taking your medications but you aren’t, your doctor may think the medication is not working. They may change your treatment plan and order unnecessary tests, procedures, and medications. Lying can potentially endanger your health and erode trust between you and your team. Honesty, even when it is embarrassing, is the best policy.
Many treatments for SMA focus on improving and maintaining function and independence, but the specific goals of treatment can be different for children and adults. People with SMA will need to transition from pediatric to adult SMA care as they reach adulthood. This can mean finding new medical support team members. Talk to your health care providers about what you need to do to prepare for this transition to adult care. Finding new health care providers who can meet your needs can be difficult, but you can work with your current health care team to find the right people.
Understanding SMA and being a part of the medical decision-making process is important for people living with SMA. Parents and caretakers of children with SMA should work to educate children about SMA and include them in decisions about their care from an early age. As children become adults, they can begin to take over as the leaders of their medical support team and have more control over their own lives.
On mySMAteam, the social network for people with spinal muscular atrophy and their loved ones, more than 1,000 members come together to ask questions, give advice, and share their stories with others who understand life with SMA.
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