Spinal Muscular Atrophy (SMA) at a Glance:

• Spinal muscular atrophy (SMA) is a rare neuromuscular condition that causes degeneration of spinal motor neurons, or the signals from the brain to muscles, resulting in muscle weakness. 
• SMA is usually diagnosed in the first few years of life when children are unable to achieve motor milestones as they grow, such as the ability to walk, stand, or sit. 
• Although SMA is a progressive disease, there are new therapies available that can slow the progression of muscle weakness. 

Medically reviewed by Oscar Mayer, M.D.

What Is Spinal Muscular Atrophy? | Common Spinal Muscular Atrophy Misconceptions | Managing Spinal Muscular Atrophy | How To Find a Health Care Provider for Spinal Muscular Atrophy | Mental Health and Spinal Muscular Atrophy | How To Talk To Others About Spinal Muscular Atrophy | How To Support Someone With Spinal Muscular Atrophy |

What Is Spinal Muscular Atrophy?

Spinal muscular atrophy (SMA) is a rare neuromuscular condition that causes degeneration of the spinal motor neurons resulting in muscle weakness. SMA is a hereditary condition, meaning that it can be “passed down” or inherited from parent to child. Understanding how SMA affects an individual with the condition will require a little bit of knowledge around genetics and physiology. But don’t worry – we’ve got your back. We’ll walk you through how SMA affects individuals step by step. Ready? Let’s get started. 

Spinal motor neurons are critical for a person’s ability to use their muscles and to maintain the health of the muscle. When you want to lift your foot to take a step, signals from your brain will travel down your body to the muscles in your legs to tell them what to do. These signals are carried by two types of motor neurons. Imagine the game “Telephone” or “Connection” that you may have played when you were a kid, where each person had to pass on a message to the person next to them, and eventually that message would reach the final destination. Motor neurons work in a similar manner. In this case, a signal is sent on one motor neuron from your brain to your spinal cord. Then, another neuron takes the message and passes it from the spinal cord to your muscles. In individuals with SMA, the spinal motor neurons, or the ones carrying the signals from your spinal cord to your muscles, degenerate over time and become less effective at their job. 

Spinal motor neurons are incredibly important for the health of muscles. If the nerves stop sending signals to your muscles the muscles will start to atrophy. Atrophy is a term used to describe muscles that gradually become weaker and die due to no longer being used. In individuals with SMA, the root cause of the atrophy is the loss of these motor neuron signals to move the muscle. 

Muscle weakness and other symptoms associated with SMA will affect everyone differently. As you will soon learn, there are several subtypes of SMA. For some individuals, symptoms from SMA can be severe and greatly limit functional capacity and in some cases, longevity. However, others living with SMA may experience much less muscle atrophy and continue to live with this condition into adulthood. 

What Are the Major Subtypes of SMA?

SMA has four subtypes which are generally characterized by symptom severity and prognosis. Historically, there were only thought to be two subtypes, but additional research and observation of SMA in adults have resulted in more information about how the condition affects people differently. 

Here are the four subtypes you should know:

• Type I: This subtype of SMA is usually referred to as “classical” SMA and can sometimes be referred to as Werdnig-Hoffmann disease. This form of SMA is the most severe, with symptoms occurring very early in life. Without treatment, this subtype of SMA usually causes death of the infant before two years of age. 
• Type II: This subtype of SMA is considered a more chronic form of the disease that develops a little bit later than type I, around 6 and 18 months of age. Children with type II SMA usually are unable to walk because of the muscle weakness that occurs early in life. However, advances in treatments for SMA type II over the past few years can have a large impact on the progression of muscle weakness experienced by those living with SMA.
• Type III: This subtype of SMA starts later and progresses slower than the previous two subtypes. It is also known as Kugelberg-Welander disease. 
• Type IV: This subtype of SMA usually begins later in life as adults, when individuals first experience muscle weakness. 

With new therapies available, classification of SMA is no longer as important for clinicians in providing care. While you or your child will be diagnosed with a subtype, your care team will likely focus more on functional capacity, i.e. are you able to sit or stand unassisted? What type of mobility devices and other assistive devices are needed? The level of functional capacity will help determine next steps for management of the condition. 

What Is a Genetic Disease?

Spinal muscular atrophy is a genetic disease, meaning that it can be “passed down” or inherited from parent to child similar to how hair or eye color can be inherited from your parents. Every cell in your body contains DNA, which acts as the recipe book for your body to create proteins. In spinal muscular atrophy, there is a specific mutation in the part of the DNA that makes the survival motor neuron (SMN) protein needed to maintain the health of motor nerves that control muscle movement.

What Gene Mutation Causes SMA?

Genes are smaller pieces of DNA that act as instructions for a specific type of protein that your body uses to function. In individuals with SMA, the SMN1 gene is missing or mutated. SMN stands for “survivor motor neuron” gene, so you can imagine that these genes are critical for your body to create the SMN protein needed for the survival of your motor neurons. Luckily, people have a second survivor motor neuron gene called SMN2. This gene can create a similar protein, but it’s not as effective as the one produced from SMN1. People can also have several copies of a gene, so people who have more copies of the SMN2 gene usually have less severe symptoms. It is the SMN2 gene that is targeted in many newer therapies for SMA. We’ll discuss those management options later in this condition guide. 

It’s also important to know that SMA is a condition that is usually inherited in an autosomal recessive pattern. That means that, for almost all cases of individuals with SMA, they received one mutated gene from their mom and one from their dad. Individuals with only one copy of the mutated SMN1 gene do not have SMA but are carriers of the condition. 

How is Spinal Muscular Atrophy Diagnosed?

Most states in the United States now assess newborns for SMA, which allows the diagnosis to come a lot earlier than before. However, if this is not done, a diagnosis is usually made after symptoms initially arise in children and in some cases, teens and adults. Because individuals with SMA lack the SMN1 gene, there is degeneration or loss of function of motor neurons which can cause a range of symptoms. 

Some symptoms associated with SMA include:

• Muscle weakness that usually affects both sides of the body and is dominant in the legs
• Muscle paralysis (complete loss of muscle function)
• Weakness in the muscles in your chest, making the ribs move downward and make the chest appear bell-shaped
• Inability of children to achieve motor milestones at the expected age such as the ability to walk, sit on their own, stand, or lift their head
• Decreased muscle tone 
• Spinal deformities 
• Repeated severe respiratory infections 

For individuals with SMA, these symptoms often first appear within the first two years of life and parents notice the initial motor milestones not occurring for their child. If SMA is suspected, doctors will conduct a genetic test which is the definitive test for the condition. This test will determine whether or not the individual has any SMN1 genes or if they are mutated. It will also determine how many copies of the SMN2 gene the individual has.

These genetic tests are very important to complete as soon as possible as some treatment options for SMA are determined by these genetic results. We’ll go over gene therapy for SMA later in this condition guide. 

Sometimes individuals have symptoms of SMA but do not have any identifiable mutations in the SMN genes. When this happens, your doctor may recommend other tests to better understand how your nerves and muscles are functioning. These tests may include:

• Nerve conduction tests to see how well your nerves are sending signals to your muscles 
• Electromyography tests to record electrical activity (which is required for muscle movement) during activity and rest
• Muscle biopsy to help diagnose other disorders similar to SMA
  

Managing Spinal Muscular Atrophy

If you or a loved one has been diagnosed with SMA, know that being here and reading this condition guide is a great first step. You may be apprehensive about the diagnosis after a quick Google search because you will likely learn that there is no cure for SMA. However, it is important to know that managing SMA ten years ago is completely different from managing SMA today. Research has been a game-changer for this condition, and we’re going to walk through the major disease modifying therapies available shortly. Learning as much as you can about your options and creating a health care team you trust is critical. 

We know that receiving a rare disease diagnosis for yourself or your child can be scary. To get us started with this section of the condition guide, Dr. Oscar Mayer, a pulmonologist who specializes in SMA, wants you to know:

“Today, SMA has become more of a chronic condition than a fatal condition. Before newer treatments became available, an SMA diagnosis usually required some extremely difficult conversations with parents. But now, initial discussions I have with parents are a lot more hopeful because we have disease modifying therapies that can drastically change the prognosis. The advice I would give parents is to recognize that while managing SMA is still challenging and having a care team is extremely important, the prognosis overall has changed for many new patients with the condition.” 

With any new medical diagnosis often comes questions. Some that you may be asking yourself about managing SMA may include:

• What does management for SMA look like? 
• How will SMA affect my or my child’s day-to-day life? 
• What is the prognosis for patients with SMA? 

The type of therapies recommended for you or your child with SMA will, in part, depend on how severe your symptoms are and what subtype of SMA you have been diagnosed with. Some options that your care team may recommend include pharmaceutical options such as gene therapy, medications to help make the SMN protein better, and treatments to treat the severity of symptoms associated with SMA. These options are often called disease modifying therapies. There are also self-care and non-pharmacological options.

Gene Therapy 

Gene therapy is a type of therapy that directly targets specific genes and helps to improve or restore normal function. As mentioned previously, SMA is caused by a mutation in the SMN1 gene. In young children diagnosed with SMA, a safe, modified virus may be made to deliver a functional SMN gene to neurons affected by SMA. 

SMN Protein Production Therapy 

Other therapies help make the SMN2 gene more effective. By using these therapies, the SMN2 gene can make the SMN protein more effectively and symptoms can be prevented or improved. 

Respiratory Therapy

Weakness in the muscles you use to breathe can make it hard to cough and clear secretions. This situation can lead to not breathing well enough to bring in the oxygen your body needs and remove the carbon dioxide your body makes. There are cough assistance devices to improve or replace an ineffective cough and ventilators that can be used through the nose, mouth, or tube to help make the oxygen and carbon dioxide levels in the body normal. The key is to work with a pulmonologist (a physician who specializes in the lungs) regularly to determine when one of these devices might be necessary.  

Meeting with a pulmonologist can help you make a clear plan on how to use the devices when you or your loved one is sick. If you or a loved one has SMA, experiencing a cold or other respiratory illness and not managing it effectively with respiratory therapy can lead to prolonged and potentially dangerous illness. 

Physical Therapy 

Physical therapy may be useful for individuals living with SMA to help maintain functional ability. Physical therapy should only be started after talking to your doctor or physical therapist to make sure it’s the right management strategy for you. Some physical therapy options include aquatic therapy, management of joint tightness, help with assistive devices, management of respiratory complications, and much more. There are also many at-home stretching and strength exercises you can do at many different levels of functional abilities and ages. The Muscular Dystrophy Association made this great resource to get you started.

 

 

Nutrition Management 

SMA can affect the muscles in your upper body, sometimes making it more difficult to swallow, breathe, or clear the airway. Individuals with SMA may be undernourished or overnourished depending on their situation, so a dietician and/or nutritionist will help make sure that the food you’re eating will help maintain your health without causing complications. You can learn more about nutrition and SMA here. 

Home Health Care 

Home health care can be a critical resource for those living with SMA. Home health care often involves a nurse assistant or nurse who comes to the house to help with activities of daily living such as bathing, dressing, and preparing meals. They can also help with transportation and medication management in some cases. Sometimes, these individuals can also be referred to as personal care attendants (PCAs). PCAs can assist in the house even if you already have family caregivers such as a parent or spouse. PCAs can be paid for privately or by Medicaid or Medicare programs. Government coverage for PCAs varies by state. 

Assistive Devices 

Many individuals living with SMA use assistive devices to help with daily living activities and mobility. Assistive devices commonly include wheelchairs, braces, cough assist machines, ventilators, and orthotics. Another assistive device that one individual interviewed about their life with SMA recommended was a patient lift. As an adult with SMA, maintaining as much independence as possible is important to them, and having a patient lift in their house allows them to use the bathroom and get out of bed independently. You can learn more about using a lifting device for SMA here. 

Additionally, technology such as Siri, voice-activated electrical switches and lights, and voice-to-text can also be incredibly helpful for individuals with SMA who struggle with muscle weakness in their arms. 

Paying For SMA Treatment

Managing a rare and complex health condition can be expensive. In interviews with adults and parents of older children living with SMA, one note that they wished they knew about managing SMA earlier was that there is financial assistance available. In the United States, individuals with disabilities like SMA may be eligible for Medicaid and Medicare benefits. These are government-subsidized health plans for individuals over the age of 65, individuals living with a disability or specific chronic illnesses, or individuals whose income is under a certain amount. Every state has different requirements for these services, but receiving Medicaid or Medicare benefits would greatly reduce the financial stress related to managing a condition like SMA. 

You can learn more about these benefits here:

• SMA and Health Insurance
• Health Insurance Roadmap for People Living with SMA and Their Caregivers 
• Supplemental Security Income (SSI) Disability & Medicaid Coverage

You may also be wondering if gene therapy will be covered by insurance. Luckily, most pharmaceutical companies have insurance navigators or case managers to help you get these treatments covered by insurance. Once you and your doctor decide on a treatment plan, you can reach out to the pharmaceutical company associated with the treatment you’ve chosen to help with navigating coverage with your health insurance company. 

What Does “Successful” Treatment for Spinal Muscular Atrophy Look Like?

When diagnosed with SMA, the first questions many people will have are around life expectancy. Answering this question can be challenging, even for a physician who knows all the ins and outs of your or your child’s specific SMA diagnosis because each person’s SMA is unique. 

SMA overall is considered a progressive neuromuscular disease with no cure. Before gene therapies for SMA were available, the subtype of SMA an individual was diagnosed with would give a person or parent a good indication of what their disease progression would look like. However, new treatments for SMA have drastically changed the course of progression and life expectancy for many children newly diagnosed with SMA. These treatments also help slow further progression of muscle weakness for older children and adults with SMA. 

We talked to Dr. Oscar Mayer, a pulmonologist who specializes in SMA, about what they consider “success” in treatment for SMA. Here’s what he said: 

“The main goal of treatment for SMA is to maximize quality of life. That’s always been the approach along the way. Success to me is being able to relieve symptoms as much as possible, allowing individuals with SMA to be able to work or be able to sit upright without support, for example. These physical outcomes for patients are huge and allow them to have a closer to ‘normal’ life. The other part of being ‘successful’ is having very aggressive and acute management plans during illness. Acute illness, especially respiratory illnesses, are very challenging for people with SMA, and good SMA management will have a plan for these scenarios.” 

If you’re feeling apprehensive about your or your child receiving an SMA diagnosis, that’s OK! Know that there are people willing and able to help you navigate this journey. Finding a specialist you trust, and surrounding yourself with a support team is a key first step. You can read more about finding a doctor and who you might consider for your health care support team below.

How to Find a Doctor for Spinal Muscular Atrophy 

Finding the right care team for any rare disease can be challenging, but it’s key to getting the best outcome. Where should you begin? 

First, identify a neuromuscular specialist (brain and muscle coordination specialist) or pulmonologist (lung specialist) and primary care physician or pediatrician you trust and feel comfortable with. Different health care professionals can help manage an SMA diagnosis, including:

• Primary care physician (PCP) or pediatrician
• Neuromuscular Specialist
• Pulmonologist 
• Geneticist
• Nutritionist/Dietician 
• Endocrinologist 
• Orthopedic Surgeon
• Urologist
• Occupational therapist/Physical therapist
• Personal Care Assistant (PCA)
• Mental health professional 

SMA is often primarily managed by a neuromuscular specialist, pulmonologist, or both. In interviews with SMA advocates, most individuals shared that they began with their pediatrician and eventually were referred to a neuromuscular specialist. As they or their child got older, a pulmonologist and personal care assistant became very valuable resources on their care team. 

Dr. Oscar Mayer, a pulmonologist who specializes in SMA, shares his advice on where to start:

“You’ll want to find SMA care at a comprehensive center or place where you can bring multiple care team members together, such as your neuromuscular specialist, pulmonologist, and physical therapist. There may be a number of additional specialists such as an orthopedic surgeon or endocrinologist to be able to address multiple parts of the condition. Depending on the status of your condition, different specialists may take the lead on your care.” 

Getting together a health team can feel overwhelming, but starting with a good primary care physician and neuromuscular specialist is a great first step. Dr. Mayer highly recommends this resource from Cure SMA about how to accomplish that task. 

To help you navigate this task, we created a downloadable discussion guide to help discuss your SMA diagnosis and next steps. We hope this guide helps you get the most out of your appointments:

 
It can be scary to receive any rare disease diagnosis, and looking up treatments online can feel very daunting because of the volume of studies and newly evolving therapies available. But don’t worry – that’s a good thing! There is a lot of research being conducted to help improve treatment outcomes for people living with SMA and your health care team will help you navigate it. You are not alone in this journey.

Spinal Muscular Atrophy Misconceptions

Unfortunately, there are a lot of misconceptions around rare disease and disability in our communities. These misconceptions make life more challenging for those living with conditions like SMA. To better understand what they’re going through, we asked individuals living with SMA and their caregivers what they wish others understood. Here’s what they had to say:

1. “My whole life, I’ve always been treated as a child or intellectually disabled, because there’s this stigma that if you are in a wheelchair, you must also be intellectually disabled. It’s infuriating.”
2. “There is a misconception that I cannot make decisions for myself because of my disability.”
3. “People believe that I am unable to be a good parent (or even have my own child) because of my disability.”
4. “Just because someone is disabled, that doesn’t mean we don’t have the right to make decisions for ourselves. We deserve privacy too.” 
5. “People [sometimes] don’t make eye contact with me, but they speak to the person with me about me, you know, like because, I must not be intelligent enough to answer on my own behalf. That happened with frequency and mostly at health care settings. I am not a child.” 
6. “One misconception around disability is that you may not be able to work as hard. We have a really hard time getting jobs, because there’s this stigma that we’re going to ask for all these “ridiculous” accommodations. And we’re going to be on a leave of absence all the time. And, you know, we’re not going to be able to do the job. And the opposite is true. We end up being harder workers than non-disabled people, we end up being more loyal, we end up being more adaptive, and more capable of doing different forms of work because we constantly have to adapt in our lives.” 
7. “There is this assumption that someone like me [with SMA] could never be a lawyer. They think that we’re at home and in our beds waiting to die. And the more that parents instill in their children that we are capable, the more likely we are to succeed and improve the society that we are in.” 

We hope that reading what the SMA community shared above can help you better navigate and understand some of the challenges people living with SMA face. The SMA and disability community have to face many preconceived notions about their ability to be independent and make decisions for themselves. The next time you see someone with SMA or a disability, remember that just because they are disabled does not mean they aren’t human and capable. 

Michele Erwin, Mighty Contributor and founder of All Wheels Up, a nonprofit organization dedicated to making air travel more accessible, challenges the misconception that disabled individuals don’t travel, leading to a lack of accessibility. The inability to board the plane, use the bathroom on the plane, and transport powered wheelchairs easily is a common complaint from individuals living with SMA and other powered wheelchair users. Here’s what Michele had to say:

“It doesn’t make any sense that the most technologically advanced mode of transportation is not wheelchair accessible, like it is on a bus, or a speed train, or even Disney rides.”

You can learn more about how she’s tackling this issue and tips on traveling with wheelchairs on her website here. 

To learn more about what people living with SMA have to say about misconceptions, check out this great story by a Mighty Contributor: My Disability Doesn’t Erase My Right to Privacy. 

Mental Health and Spinal Muscular Atrophy

It’s important to remember that living with a rare disease can also affect your mental health.

Growing up with a rare disease diagnosis and disability can be scary, and it may surface many worries or fears for the future. As you get older, you have to adjust to adulthood,figure out who you are, and learn to be comfortable with yourself. Doing so can be challenging. Living with a disability and progressive disease like SMA adds a layer of complexity for children and young adults living with the condition. Adults may also struggle with these aspects of their lives as well. 

Mental health is often overlooked in health care and isn’t often a core aspect of treatment plans. Yet, SMA comes with its own challenges, like a lack of control over symptoms, that can affect mental health. There may also be fears about disease progression, low self-esteem, and social isolation, especially as young adults. 

If you or your child is struggling with your mental health while living with SMA, know that mental health professionals are available. Seeking help does not make you less “strong,” it is simply an act of kindness to yourself, a way you can help yourself become stronger in different ways, not strong in the first place. You may be thinking, “but I have SMA and my anxiety or depression is just around the condition – how will a therapist understand the experience?” Luckily, there are therapists and other mental health professionals who specialize in therapy for individuals who have rare diseases. 

It can be hard to be vulnerable, but opening up to your health care provider and a therapist is important. These conversations may give you coping strategies and treatment options to improve your quality of life. If you’d like to see a therapist, or set up an appointment with one for your child, know that there are many therapists available. They can help you or your child develop coping strategies and help improve your mental health. To get started, you can use this online tool to find some nearby. 

[Find a Therapist Tool]

If you’re looking to hear from the perspective of someone who “gets it,” check out this story from a Mighty Contributor: My Journey From a Bullied Child to a Proud Woman With a Disability. 

How to Get Help in a Crisis

If you’re struggling with suicidal thoughts, know you are not alone. There is help for people who feel suicidal. If you need help right now, you can call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741. Head here for a list of crisis centers around the world and visit our suicide prevention resources.

How to Talk to Others About Spinal Muscular Atrophy

An SMA diagnosis can be difficult for you to receive, and also for others to hear. Usually, an SMA diagnosis is given in the first few years of life, and parents are the first ones to learn about what living with SMA might look like for their child and family. There will be concerns and fears from both sides and everyone reacts differently to stressful situations. 

One tool you can use along the way is information from your health care team and other SMA advocates who know what you’re going through. By better understanding what you’re about to experience or currently experiencing together, you and your loved ones will be better equipped. 

While this journey can be challenging and trying to navigate it can be draining (you’re doing a great job, by the way), we hope you can feel comfortable talking about what you’re going through, whether that’s with your doctor, your friends, your partner, or even a fellow Mighty on our app. No matter what, our Mighty community is here to help. We’ve got your back. 

It’s important to be open about your needs and limits to your family, friends, work colleagues, and community. You may encounter a situation where a family member or a friend makes assumptions about what you or your child can or cannot do with a disability. You may receive comments related to your mobility aid or potential playmates for your child with SMA may ask questions about their disability. 

Just remember that how much you talk about your or your child’s SMA diagnosis to others is completely up to you. And once your child gets older, they will establish their own comfort level as well. Yes, it’s OK to set boundaries! 

Being open with your family and friends about your limits and needs doesn’t make you “too much.” Saying “no” won’t make you a “worse” friend. Be your own best advocate. After all, no one knows your body and its limits better than you do.

If you’re struggling at work or school with accommodations related to your diagnosis, know that there are options available to help through your employer’s human resources (HR) department and through your or your child’s school. Accommodations may be made to help you complete your work, such as working remotely, assistive devices, and personal care assistants. You may also be able to access free mental health resources with your employer’s health insurance plan or HR benefits. 

We know it can be tough to communicate your needs and experiences with people in your support system (especially on rough health days), so we created the worksheet below for you to fill out when you’re feeling up to it. Share it with those who are eager to learn more about what you or your child goes through with SMA. We hope this can be a bridge to better communication for everyone. You all deserve it.

 

How to Support Someone Living With SMA

If you are learning about SMA for the first time, you are probably wondering how you can best support someone with the condition. It’s OK if you’re unsure – SMA is a rare condition and taking the time to read this condition guide is a great first step. The most important thing to keep in mind about supporting someone living with a condition like SMA is that you should never assume. Everyone lives with the condition differently, so the best source of information about their lived experience is, of course, the individual living with the condition or their caregiver if they’re a young child. That’s why the key to success is good, open communication paired with active listening.

Just remember: You don’t have to be a doctor who specializes in SMA to be a key supporter for someone living with it – you just have to have an open mind and respect the boundaries of your friend, coworker, or loved one with SMA. 

We’ve interviewed individuals living with SMA and their caregivers, and gotten some tips from the disability community about some general “dos and don’ts” around how to best support someone living with SMA. Here are some themes to keep in mind:

Be careful about how you treat mobility aids

Many individuals living with SMA use mobility aids such as powered wheelchairs. One way to support someone living with SMA is to remember that mobility aids are not toys. Refrain from making jokes such as “How fast does this go?” or “Can I take this for a spin?” Mobility aids are seen as an extension of their person, so try and treat their mobility aids as such. 

Respect autonomy and ask permission 

One common frustration individuals in the SMA and disability community have shared is that people often don’t treat them as autonomous individuals. This situation often gets worse as they get older and become adults. Just remember that disabled individuals can make their own decisions and that conditions like SMA have no impact on their ability to do so. If you’d like to help someone living with SMA with a task, ask permission first. Just because they have a disability does not always mean that they need, or want, help. 

Don’t make assumptions about living with a disability 

Living with any disability can make living a certain way or doing certain tasks more challenging. However, it’s important to keep in mind that every disability is different. Just because you know one person who has a disability doesn’t mean you know what the lived experience is like for someone you know who lives with SMA. If you want to know more about what living with SMA is like, ask your friend, coworker, or loved one if they are OK with you asking them about their lived experience. You may be surprised by some things they share about their experience! 

Just remember: If the person you’re trying to support doesn’t want to talk about their diagnosis in detail, don’t force it. Everyone will have their preferred way of navigating their journey with SMA. And keep in mind that some questions are inappropriate. 

One Mighty Contributor shared:

“I definitely prefer that people ask me questions about SMA if they’re curious. But it’s to a limit. Like, don’t ask me if I can have sex if we don’t know each other, which is a very common question from strangers, by the way. It’s really bizarre. You wouldn’t ask that to a stranger, so why is it OK to ask me just because I have a disability?”

Here are some stories that may also help:

• 7 Things You Can Do to Teach Kids About Other Children With Disabilities 
• 12 Everyday Frustrations of Being a Wheelchair User 

Living with SMA is a unique journey. Everyone’s experiences will be different but just reading this educational resource is a thoughtful first step. Thanks for being here.

This condition guide was created with support from many Mighty contributors and medical experts. You can learn more about the individuals interviewed for the creation of this resource here:

• Dr. Oscar Mayer – Pulmonologist from Children’s Hospital of Philadelphia who specializes in SMA. 
• Ariella Barker – Mighty Contributor and attorney 
• Michelle Erwin – Mighty Contributor and founder of All Wheels Up, a nonprofit dedicated to making air travel more accessible. 

And to the Mighties in our SMA community: Thank you! 

[Sources]

Check Out The Mighty’s Spinal Muscular Atrophy Topic Page!

If you or a loved one lives with SMA and want to connect with other Mighties who’ve been there, check out The Mighty’s SMA topic page. Join the conversation around SMA, learn more about resources, and become part of a family who gets it. 

Click here to learn more.