Transitioning To Adulthood with SMA...I was raised by two amazing parents who truly fought for the best for their children, both disabled and not. Like I...reactionscomments
Parenting From a Wheelchair...Being a mother is an adventure in itself, but when you add two young children and a wheelchair to the mix, things...reactions1comment
Embracing Independence: My Journey with Incontinence...Growing up with spinal muscular atrophy (SMA) and relying on a wheelchair, my daily life was an intricate dance of navigating the...reactions2comments
Getting Comfortable In My Style...Living with spinal muscular atrophy (SMA) brings its own set of challenges. Some challenges are glaringly obvious. Others play out behind the...reactionscomments
The Importance of Wearing Your Seatbelt with SMA...In my younger days, donning my belt each morning was a steadfast ritual. It was something I did everyday, like brushing my...reactionscomments
Perks of Living With SMA...Some might think living with spinal muscular atrophy (SMA) is all bad. That life is full of doom and gloom, but I...reactions4comments
Things That Make Me Angry About SMA...Having a disability like spinal muscular atrophy is extremely challenging. Every day is a battle between my body and my mind. Frankly...reactionscomments
My Experience With SMA & Anesthesia...Every two years I have to get minor outpatient surgery to change my peg g-tube. This unfortunately has to be performed in...reactionscomments
When Your Equipment Breaks...My worst nightmare is the thought of any of my equipment breaking at a time when I need it the most. Whether...reactionscomments
Transitioning to Adult Care...Something that’s rarely talked about in the SMA community is the process of transition from pediatric to adult care. It’s hard enough...reactionscomments
Having Adult Braces...Previously I wrote about getting my wisdom teeth removed and the pre and post-surgery to make sure everything was successful considering my...reactions1comment
Why I Love and Hate My G-Tube...“Steve Stoma is the worst roommate.” Yes, I named my g-tube and that’s what I tell all doctors and people who have...reactionscomments
What to Bring to the Hospital...Previously I wrote about preparing for surgery and the considerations surrounding anesthesia and intubation. But when you have SMA there’s unfortunately so...reactionscomments
Planning a Family With SMA: Things to Consider...If you have a child with spinal muscular atrophy (SMA) or are a carrier of the SMA gene, you face some serious...reactionscomments
Preparing for Pregnancy When You Have SMA - Questions for You, Your Partner, and Your Doctor...Deciding to become pregnant as a female with SMA can be a very big decision. In my case, I knew I had...reactionscomments
What Causes Spinal Muscular Atrophy?...Spinal muscular atrophy (SMA) is a genetic disorder. This means that SMA is inherited by children from their parents, and it is...
SMA Testing And Diagnosis...Spinal muscular atrophy (SMA) is an inherited disorder that can be diagnosed using a genetic test. Genetic tests use a blood sample...
What Does It Mean to Be a Silent Carrier for SMA?...Spinal muscular atrophy (SMA) is a rare genetic disorder passed from parents to their children. SMA affects the spinal nerves by causing...reactionscomments
Genetic Tests for SMA Diagnosis...Spinal muscular atrophy (SMA) is an inherited condition that can be diagnosed with a genetic test. People are usually diagnosed with SMA...
Spinal Muscular Atrophy: Self-Care Tips for Caregivers...Spinal muscular atrophy (SMA) is a lifelong condition. SMA is most commonly diagnosed at birth or during early childhood. The symptoms of...reactions1comment
