SMA empowerment: Co-piloting your healthcare journey

Flying with spinal muscular atrophy can be challenging, but preparation makes all the difference. These eight travel tips cover everything from booking accessible seating to managing fatigue and knowing your rights in the air.

Knowing when to consider changing SMA treatment can be challenging. This guide explains the signs, questions to ask, and how to work with your care team to make the best decision for your health.

Starting a conversation about an SMA treatment change can feel overwhelming. These SMA doctor communication tips and a sample script can help you prepare, ask the right questions, and advocate for your care.

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.

Making your home more accessible can ease daily life with SMA. From smart tech to safer bathrooms, small upgrades can support greater independence, comfort, and long-term mobility.

Navigating life with SMA can feel isolating at times, but you don’t have to do it alone. Creating a strong, reliable support system can offer the understanding, strength, and encouragement you need to thrive — emotionally, physically, and socially.

Sleep disorders in SMA create significant challenges as breathing difficulties and muscle weakness disrupt sleep and overall well-being. Tailored interventions and caregiver support can improve sleep quality and overall health.

Test your knowledge of spinal muscular atrophy (SMA) with this quiz covering its genetic causes, diagnosis, and treatment options. Whether you're new to SMA or catching up on the latest advancements, it's a great way to stay informed.

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.

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.