Living

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...

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...

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...

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...

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...

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...

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...

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 hit the...

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...

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...

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...

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...

Navigating the challenges associated with neurodegenerative conditions has always been an arduous journey, filled with ups and downs. Living with spinal muscular atrophy (SMA) feels akin to managing a full-time...

Some might think living with spinal muscular atrophy (SMA) is all bad. That life is full of doom and gloom, but I am here to let you know it’s not...

The other day, I fell out of my wheelchair. It’s not the first time this has happened, but it was definitely the most memorable. I’ll admit, when I was younger...

Living with spinal muscular atrophy (SMA) Type 2 brings a unique set of challenges into my everyday life, but nothing has tested me quite like my current battle with kidney...

Throughout my childhood, dogs were a constant presence in my life. From Golden Retrievers to Yorkies and Chihuahuas, I was surrounded by faithful companions who brought immense joy and comfort...

From childhood onward, change has been a constant challenge for me. Every time I needed a new wheelchair or medical device, anxiety would grip me tight. It always felt like...

December is officially upon us! At the end of the year, I reflect upon it. Usually, my seasonal depression really affects me, and this year, I finally don't feel that...

Recently, I began going to see a therapist for my depression and anxiety. I was diagnosed with major manic depressive disorder. This means when I’m down, I’m really down. Therapy...