Coping with a chronic illness is challenging, both physically and emotionally. Often the illness can change the way we look, making us feel self-conscious or embarrassed. This is not helped by people commenting on physical changes like weight gain or loss, or other body or facial changes. MORE: 10 tips for a ‘common…
A physical therapist (PT) will play an integral role in the care of your child. Finding a physical therapist who has experience working with a child who has spinal muscular atrophy (SMA) is paramount, but there are other things you need to consider when searching for a PT. MORE: Five areas that…
Many medications and therapies for spinal muscular atrophy (SMA) need to reach the spinal cord to be effective. However, this can be quite difficult to achieve as many medications have trouble crossing the blood-brain barrier that protects the spinal cord. Some drugs and therapies are able to cross the barrier, but others such…
We know dealing with spinal muscular atrophy (SMA) sometimes feels like an uphill battle, both for the patients and the caregivers. You feel like you’re not doing enough or as if the disease is taking up all your time and attention. To help you on your journey, we’ve gathered a few…
Follow us on Facebook. MORE: Cure SMA’s Webinar on the FDA approval of Spinraza SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional…
There are quite a few books by experts and SMA advocates that help guide caregivers and through patients through the neuromuscular disorder. One of the top-rated books is the Family Guide to the Consensus Statement for Standard of Care in Spinal Muscular Atrophy, which was created to help the families…
Spinal muscular atrophy (SMA) is a genetic neuromuscular disease. SMA patients have either a missing or altered gene, (the survival motor neuron-1 or SMN1 gene), which causes large motor nerves of the spine to become abnormal, according to Move Forward. MORE: The three main symptoms of SMA. Diagnosis When…
Managing a chronic illness can be difficult. There are many different medications to take (often at different times), appointments to remember, symptoms to keep track of, and lots of information to absorb. Thankfully, living in a digital age means that there are numerous mobile apps that can help you manage…
https://www.youtube.com/watch?v=9z4jkn4Wv3w In this video from MoveForwardPT, a physical therapist (PT) from the Children’s National Medical Center talks about role PTs play in optimizing movement for children with muscular dystrophy (MD) and spinal muscular atrophy (SMA). MORE: What kind…
In this video from Cure SMA taken at the SMA patient-focused drug development meeting with the FDA in April 2017, parents of children with SMA types 2 and 3 explain how the disease impacts their daily lives. MORE: SMA explained – 15 keywords you should know. In addition, hear…
