Tips for Talking to Your Doctor About SMA
Most people living with spinal muscular atrophy (SMA) need care from multiple doctors. Regular doctor’s visits help you or your child manage breathing, nutrition, and movement. This can help improve quality of life and life expectancy.
Communicating with doctors about SMA can be overwhelming. It is normal to feel overloaded with information, especially right after a diagnosis.
A strong relationship with doctors can help you make treatment decisions that work for you and your family. Talk to them openly about your concerns and priorities. And do not be afraid to ask as many questions as you need.
How can I find a doctor who I trust?
An open and honest relationship with your doctor can improve the quality of care for you or your child. Your doctor should be able to give you information about all possible treatment options. Tell them how life at home, school, and work may affect health and treatments for you or your child.1
For example, share your worries about any treatments they recommend. You can then make decisions about treatment together. This can also help you take more control of your family’s care. This is especially important for parents making hard decisions about end-of-life care for children with Type 1 SMA.2
Talk to your doctor openly about your mental health. Having or caring for a child with any chronic disease can be an emotional burden.
Your doctor can keep your mental health in mind when suggesting treatments. And they can advise ways to stay mentally healthy, such as by referring you to a mental health professional.2
Finding doctors who you trust and who also have experience with SMA can be difficult. Here are some places to look for clinics and doctors near you:3
- Muscular Dystrophy Association
- Pediatric Neuromuscular Clinical Research Network
How should I prepare for my doctor’s visit?
Many doctor’s visits are short. Prioritize your concerns ahead of time to make sure you get the information you want. Before the visit, make a list of topics you want to talk about. For people with SMA and their families, these topics may include:1
- New or worsening symptoms, such as joint contractures
- Breathing management techniques
- Nutrition or dietary changes
- New test results
- Disease-modifying treatments
Bring a pen and paper so you can take notes during the visit. Consider bringing a friend or family member who can support you. They can also listen to the doctor to help understand what they are saying.1
What questions should I ask my doctor?
Doctors sometimes give lots of complicated information very quickly. Do not be afraid to ask questions to understand them fully. If they are using a lot of complex medical terms, ask them to explain it in a different way.1
Repeat information back to your doctor to make sure you understood them properly. They can clarify any misunderstandings. Some people may feel like doctors do not take their concerns seriously enough. If this happens, ask them why they are not as concerned as you are. A good doctor can explain their reasons and reassure you.1
Some examples of questions you may want to ask your doctor include:3
- Can you tell me more about the genetics and causes of SMA?
- What is the life expectancy and prognosis for people with this type of SMA?
- What symptoms and complications are common for people with this type of SMA?
- How will my mobility and independence or my child’s change over time?
- Are there assistive devices that can improve mobility and quality of life?
- What therapies are available for breathing and movement problems?
- What lifestyle changes can help keep me or my child healthy?
- What are the risks and benefits of certain treatments, procedures, or therapies?
- How can I find help paying for disease-modifying treatments?
- Should I or my child participate in any clinical trials?
Have you found an SMA specialist you trust?