Dressing with Confidence: Finding Adaptive Clothing for Life with SMA...When living with spinal muscular atrophy (SMA), finding comfortable, functional, and stylish clothes can be a significant challenge. See some tips below for finding adaptable clothing, and hear what others...reactionscomments
My Chart & other electronic communications...How do you feel about communicating with your doctor with MyChart or similar computer-based platforms? Does it make things easier on you or do you prefer talking to your doctor?...reactionsreplies
Performing on the Stage With SMA...The bright lights of Broadway have long been a beacon for dreamers, a symbol of passion, talent, and hard work converging to create magic on stage. But let's be honest:...reactionscomments
Advice for First Time Living Independently/Managing PCAs...Hello! I am a college student and will be living independently with just PCAs soon for the first time. I am very nervous about having to manage PCAs by myself...reactions1replyCaregivingEducation & Schooling Insurance
Needing Speech Therapy With SMA...Recovering from my kidney stone removal didn’t go as planned. I expected some discomfort, but I never anticipated the complications that followed. Since it was an outpatient procedure, I went...reactionscomments
Asking For Help With SMA: Grocery Shopping...Living with spinal muscular atrophy (SMA) Type 2 means navigating a world where asking for help is a constant necessity. My body simply cannot do everything I want it to...reactions2comments
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 share my experiences and stories for good is...reactionscomments
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 of life. Understanding these facets is crucial for...reactionscomments
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. The shooting took place in an entirely different...reactions1comment
Have you encountered challenges with your SMA treatment?...Whether it be side effects, financial, insurance denials, or complications, please share with us. We'd love to hear a bit about your treatment journey....reactions5repliesTreatmentTips & Advice
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 feel more like obstacles to overcome than opportunities...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 my spinal muscular atrophy type 2 (SMA) and...reactions4comments
Community Question: What would you buy?...If you found $100 on the sidewalk and wanted to help yourself manage your SMA, what would you buy?...reactionsrepliesResources
Anxious When I Am Alone...I was having a panic attack about being alone. As of writing this, I got a facial yesterday. My parents decided to hang out by the pool in the spa...reactions3comments
Losing Weight With SMA...When people think about losing weight, they often envision crafting an exercise routine tailored to their body's needs — a regimen that promises to target and tone problem areas. They...reactionscomments
Best Experience Ever...I was thrilled to be nominated as one of the finalists for the Women of the Future Award - Asia. The experience itself was nothing short of extraordinary and gave...reactionscomments
Holiday Season Blues...The holiday season, with its festive lights and warm gatherings, often evokes a bittersweet feeling within me. Maybe it's because my birthday coincides with this season, serving as a reminder...reactions3comments
Venting about dating sites...I have used them off and on for years now. I really hate how they are set up. Most of them prioritize photos to an extent that sometimes people have...reactions3repliesDisabilityIntimacy & RelationshipsStigma
SMA Friendly Christmas Gift Guide...As the holiday season rolls around, it’s time to find thoughtful gifts everyone will love. If you’re shopping for a teen or adult with spinal muscular atrophy (SMA), finding the...reactions4comments
Overcoming Obstacles...What has been the biggest obstacle that you have overcome with SMA? What was your greatest challenge and how did you get through it? Health Leader Samantha Przybylski writes: The...reactionscomments
