Chaz Hayden

Note: This year's theme for SMA Month was SMA does not define us. For Chaz Hayden, a patient leader for SpinalMuscularAtrophy.net, his life as a writer is one way he...

Recently I went on a search to find an accessible hobby that didn’t include technology or staring at a screen. I didn’t have much luck since technology is a key...

One of the biggest challenges of living with SMA is buying new clothes, especially pants. For me, it’s not possible to go to a store and quickly slip on a...

Recently I felt like I was stuck in a rut with my hobbies or activities to unwind. It seemed like I was either on my computer or watching TV. And...

Summertime is an interesting part of the year for people with disabilities, especially children. Warm weather seems great, but really it leads people to inaccessible places like the beach, going...

Previously I wrote about preparing for surgery and the considerations surrounding anesthesia and intubation. But when you have SMA there’s unfortunately so much more to think about and pack when...

Recently I shared how my journey with Evrysdi stopped after taking the medication for over a year. This was for a few reasons, the primary being insurance battles and their...

Not everything that happens in Vegas stays in Vegas, especially when it comes to sharing stories. Like how I got upgraded to a suite, free admission to the casino pool...

When SMA treatments first became available, I honestly wasn’t sure how I felt. At the time it was just Spinraza which I never tried due to other medical issues and...

Every two years I have to get minor outpatient surgery to change my peg g-tube. This unfortunately has to be performed in the main operating room in the hospital so...

Growing up, it seemed like my parents were always fighting with the school district about something. Most of the challenges I faced as a student were physical like being able...

My worst nightmare is the thought of any of my equipment breaking at a time when I need it the most. Whether it be my wheelchair, BiPAP, cough assist machine...

Previously I wrote about getting my wisdom teeth removed and the pre and post-surgery to make sure everything was successful considering my respiratory issues. But the process to fix my...

Something that’s rarely talked about in the SMA community is the process of transition from pediatric to adult care. It’s hard enough to find a good team of doctors who...

Around the time I got my g-tube, I also realized that I was having problems with my jaw and teeth. After I had braces as a teenager, I never had...

Searching for a dream home or apartment is a daunting task and even more so for a person with a disability. There aren’t any laws that mandate accessible requirements within...

Recently I just got over my second respiratory infection in two months. Thankfully I hadn’t been sick or needed an antibiotic in over two years. Every time I get sick...

Everybody deserves to get away and chill by the pool or visit their dream destination. But traveling with a disability can be a scary thought considering what medical equipment needs...

When it came time to start looking at colleges, there were two major items on my list that had to be checked: a wheelchair-accessible campus and an amazing football team...

Growing up, I never felt embarrassed or ashamed of the extensive medical equipment that was on display in my bedroom. A BiPAP, suction machine, air concentrator, cough assist, pulse-ox monitor...