SMA In America: Results from Our 2022 Survey...In our first ever Spinal Muscular Atrophy In America Survey, we collected information from 54 adults living with SMA and 8 caregivers about their experiences of living with this rare...Reactions0reactionsComments0 comments
Cooking Without Hands...Have you ever had a desire to cook an amazing meal for someone but had a thought, “how would I do that? With my spinal muscular atrophy, I can’t lift...Reactions0reactionsComments2 comments
Is this SMA?...Besides having severe multilevel spinal stenosis, my MRI says There is a left paraspinal muscular atrophy. Multilevel degenerative changes with multilevel disc desiccation is seen. Is this SMA? Thanks! Alan...Reactions0reactionsComments2 repliesAwareness
Breaking the SMA Barriers...Everyone has to deal with barriers. When we think of spinal muscular atrophy we probably assume these barriers are physical. I want to talk about the barriers we put on...Reactions0reactionsComments1 comments
Barriers with SMA...What do you feel are your greatest barriers living with SMA? How do you navigate these barriers? Start the conversation and let our community member join in....Reactions0reactionsComments0 repliesMental Health
Helping My Daughter Make Choices and Experience Life...I realized that we, as parents of a child with spinal muscular atrophy (SMA), were trying to do everything possible to meet her needs. There were many choices in life...Reactions0reactionsComments0 comments
Voting With a Disability: What to Know...Voting is a fundamental American right, but it has special meaning for people with disabilities, like spinal muscular atrophy, or health conditions. Until federal laws like the Americans with Disabilities...Reactions0reactionsComments1 comments
Medical Review Board...The Health Union Medical Review Board is made up of board-certified healthcare professionals with extensive experience in their respective fields. They review and ensure that our content is accurate and...
Making the Best of It...I recently watched a new movie based on a true story about a young man who unexpectedly became a quadriplegic due to an accident. Even though I have spinal muscular...Reactions0reactionsComments1 comments
FeaturedStaying Positive with SMA ...Do you have a special way to keep positive despite the challenges of SMA? What works for you? Join the conversation below....Reactions0reactionsComments5 repliesCopingMental Health
Editorial Team...The Editorial Team works with its Medical Review Board and experienced medical writers to provide Health Union's Community Team with reliable, easy-to-understand information about a host of chronic health conditions...
Community Team...Welcome to Health Union's Community Team. Our Community Team is made up of a diverse group of employees of Health Union who bring you engaging, accurate information about living with...
My Reactions To Finding Out That My Daughter Had Spinal Muscular Atrophy...My experience with anticipatory grief (AG) began when Jessie was about 3 months old. She was not meeting her developmental goals compared to her twin brother. Our pediatrician advised us...Reactions0reactionsComments0 comments
Computer Assistive Technology...Symptoms of spinal muscular atrophy (SMA) can make it hard to use technology. Computer assistive devices and strategies can improve access. They can help people with SMA communicate, maintain independence...Reactions0reactionsComments0 comments
This is Her Space...Advocacy is part of my daily life. I provide family support to newly diagnosed families, I share Emma’s story as a patient ambassador for the treatment she receives, I work...Reactions0reactionsComments4 comments
Living With SMA Type 2 at 49...You'd think, "OMGosh she’s bedridden or should be." I have been on my own since I was 28 and have had to many challenges. I was married that year and...Reactions0reactionsComments2 comments
The Art of Chewing and Swallowing with SMA...If you’ve lived with spinal muscular atrophy for any length of time you expect to have weakness progress in your body. However, one area I was never prepped for weakening...Reactions0reactionsComments3 comments
Being a Parent of a Child with SMA...I have talked about this a few times already. I have also read other parents' points of view on this site. I can say with certainty that we all come...Reactions0reactionsComments0 comments
About You: An Author and a Character with SMA...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...Reactions0reactionsComments3 comments
Modifying Your Home for More Independence...Spinal muscular atrophy (SMA) is a rare genetic condition that causes muscle weakness. People with SMA may have problems with doing daily activities, movement, and speech.1 Having an accessible home...Reactions0reactionsComments0 comments
