Dating and Intimacy With SMA...Having spinal muscular atrophy (SMA) does not mean it is impossible to date or have sex. Adults with SMA still have happy...
"When I’m an Adult, I Will Walk"...Do ducks swim in their own pee? Are babies even real? Or just pretend? When I’m an adult, I will walk. This...reactions4comments
My Process For A New Wheelchair...Hello all! Today I wanted to share my wheelchair stories and my tips for getting a new one! Since my family can't...reactionscomments
On Being Told To Live Independently...“You should learn to live independently. There’s a cerebral palsy patient that renovated her house and lives alone” “You should learn how...reactions1comment
Types of Spinal Muscular Atrophy...Spinal muscular atrophy (SMA) is a group of inherited disorders. SMA causes certain muscles to become weak and waste away (atrophy). SMA...
Raising Awareness About Early Diagnosis and Immediate Treatment...As someone living with spinal muscular atrophy (SMA), I know firsthand the challenges and triumphs that come with this condition. That's why...reactions1comment
Why Are You in a Wheelchair?...This is the question that every person with SMA will be asked more times than anything else in their life. Parents who...reactionscomments
If I Knew Then What I Know Now...When I was around 10, I was going through a lot of drama with my personal nurses. So now, I want to...reactions4comments
The Number One Beach Accessory You Might Not Know About...The beach for me as someone with spinal muscular atrophy can be a difficult place. I often feel most disabled in this environment...reactionscomments
Debunking Myths About Living With a Rare Disease...Since spinal muscular atrophy is part of a rare disease, I’m taking this opportunity to recap the journey. To be able to...reactionscomments
SMA Awareness Month 2022...August is Spinal Muscular Atrophy (SMA) Awareness Month! Receiving a diagnosis for spinal muscular atrophy can be a long, frustrating process, leading...reactionscomments
A Sense of Belonging...I can't remember if I've mentioned this before but for most of my life, I hid my SMA as much as possible...reactionscomments
Complications of Spinal Muscular Atrophy...Muscle weakness is progressive in the major types of spinal muscular atrophy (SMA). This means that over time, muscles become weaker. As...
Curious About How Others Manage SMA? Share Your Experience in Our Polls...Navigating life with Spinal Muscular Atrophy (SMA) encompasses a myriad of challenges and triumphs, particularly concerning treatment experiences, personal relationships, and quality...reactionscomments
Evrysdi™ (risdiplam)...In 2020, the US Food and Drug Administration (FDA) approved Evrysdi™ (risdiplam) to treat adults and children over 2 months old with...
Embracing The Challenges...I had the opportunity to participate in a video production for Rare Disease Day 2025, and it was a truly wonderful experience...reactions1comment
Making Medical Care More Accessible: 5 Simple Steps to Get It Right...If you’ve ever felt frustrated during a doctor’s visit, you’re not alone. For many of us with disabilities, those visits can sometimes...reactions1comment
Navigating Life Decisions with SMA...A few weeks ago, I went in for my routine pulmonary checkup. These appointments happen every six to twelve months because of...reactions4comments
Changing My BiPap Machine...From childhood onward, change has been a constant challenge for me. Every time I needed a new wheelchair or medical device, anxiety...reactionscomments
Help Center...You’ve come to the right place! Get answers to the most frequently asked questions about the inner workings of SpinalMuscularAtrophy.net, as well...
