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...
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
Modifying Your Home for More Independence...Having an accessible home can help with some of the challenges of living with SMA. It can help with living more independently...reactionscomments
Now Closed: SpinalMuscularAtrophy.net Giveaway...The SpinalMuscularAtrophy.net Giveaway is now closed. Thank you for your interest! We're excited to announce a special giveaway for our community! We...reactionscomments
We Flow with the Changes in Our Child...Yes, your role as a parent changes remarkably as your child grows from that little toddler into school age and then again...reactionscomments
The Joy of the MDA Summer Camp...I think we all can remember watching the MDA Telethon over the years. In addition to raising funds for research, a week...reactionscomments
Remembering the First Days...As you move along in your life’s journey, the memory of life-altering events comes back in detail. We remember that wedding day...reactions1comment
The Journey Begins...I am the parent of a wonderful son who lives with SMA. What I’ve learned is that when you have a loved...reactionscomments
