Whether you have spinal muscular atrophy (SMA) or are a caregiver for someone with the disease, it’s important to feel like you are an active participant in your care or that of your loved one. This is your life; empower yourself and gain control of your journey.
Find an SMA specialist near you
From preparing for appointments to maintaining open communication with your healthcare team, a variety of strategies and best practices can help make your doctor visits or clinic days as efficient and beneficial as possible.
Coordinating among the various specialists that someone with SMA may need on their care team requires patients and their families to be proactive about communicating with providers, documenting instructions, and advocating for their own needs.
Your SMA healthcare team is typically made up of a comprehensive, coordinated multidisciplinary group of healthcare professionals who, depending on needs and SMA type, can help you or your child move and breathe better, maintain good mental health, and help manage symptoms.
As someone who has lived with SMA for three decades, Kevin Schaefer says he has learned the importance of living well with his disability, rather than actively fighting against it. He shares what works for him with the hope that it might help others, too.
Setting up a personalized care plan that takes into account disease progression and addresses your changing physical and emotional needs is one of your first steps toward effectively managing SMA.
To maintain consistent treatment, it’s important to be in regular contact with your healthcare team, stay connected with your support network, and make self-care a priority, including your mental health.
Every person with SMA deserves to have comprehensive care and to know they'll be taken care of, no matter what happens, from birth to death, says patient advocate Brianna Albers.
The life expectancy for people with SMA depends on the type of their disease and symptom severity. Starting treatment early is thought to improve life expectancy, and disease-modifying therapies can work to slow or halt progression of the various symptoms of SMA.
As SMAers, we’ve probably all been there. We work tirelessly to build a caregiving team. We train, explain, and expose the inner workings of our dignity. We allow new hands and energy into the routine of our daily…
Exercise can offer many benefits to people living with spinal muscular atrophy by increasing muscle strength, flexibility, and range of motion. A physical or occupational therapist can help establish a safe exercise program.
