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There are many ways you can help children and their families get the care they need.
Children with spinal muscular atrophy (SMA) need care from experts in several medical fields. The Spinal Muscular Atrophy Program at Boston Children’s Hospital brings together a comprehensive team of specialists who are experienced in caring for children with SMA.
We hold a dedicated SMA clinic once a month so that your child can receive all of his or her SMA-related care in a single visit. This multi-disciplinary approach means that our various specialists work closely with each other and with your family so that your child’s care is well coordinated.
Physicians and researchers at Boston Children’s Hospital make clinical innovation and research on SMA a priority. We work every day to improve the care we provide to our patients and their families.
Spinal muscular atrophy (SMA) is a genetic condition in which the muscles throughout the body are weakened because the cells in the spinal cord and motor nerves do not work properly. Approximately 10-16 people out of every 100,000 children are born with this condition.
The severity of this condition varies greatly between individuals, so the diagnosis of SMA is broken up into three main groups. These are referred to as SMA type I, SMA type II, and SMA type III. The type of SMA a child has is determined by the highest motor function the child achieves.
While these three types are all considered to be part of the same disease with one genetic cause, there is great variability in the severity of the condition and the challenges an individual with SMA faces.
Our Spinal Muscular Atrophy Program at Boston Children’s Hospital is devoted to providing comprehensive care for children with spinal muscular atrophy (SMA). The program brings together specialists from a variety of fields including:
Our core team of physicians, specialists and therapists sees patients together once a month. When you come for an appointment during this clinic, your child will be seen by three teams of specialists:
The clinic allows you to meet with all of your child’s SMA-related providers during a single visit. It also gives us the opportunity to evaluate your child’s health as a whole, and to talk with your family so that we can make the best decisions moving forward as a united front.
Our SMA clinic time also gives you a chance to meet other families affected by SMA, if you wish, and to learn about research opportunities.
We have a network of specialists who are experienced in caring for children with SMA. For example, a child with SMA who needs anesthesia for a surgical procedure can have complications because of weakness in his or her respiratory muscles. Because of this, we work with several Boston Children’s Hospital anesthesiologists who understand SMA and have expertise of how to safely provide anesthesia for our patients. See the Meet our Team tab for a list of the specialists we collaborate with.
For families whose children are facing an especially difficult prognosis, we put them in touch with the Pediatric Advanced Care Team at Boston Children’s. This group can provide comfort for you and your child and support as you make choices about treatment.
We use a number of different tests to help us accurately diagnose your child and evaluate his or her condition. Our program takes advantage of several superb clinical and laboratory resources at Boston Children’s:
Electromyography (EMG) and nerve conduction velocity (NCV) studies are performed to record the activity of muscles and motor nerves. Children’s has its own EMG laboratory, which is staffed by the neurologists in our program.
Genetic testing is done right here in the Boston Children’s Genetics Diagnostic Laboratory.
Our SMA Program at Boston Children’s is supported by the Spinal Muscular Atrophy Foundation.
How two young sisters cope with a rare muscle wasting disease
Boston Children’s Hospital’s SMA (Spinal Muscular Atrophy) Center was singled out as one of the top centers in the country in an ABC News report on a family’s struggle to get the proper diagnosis and help with their daughter’s rare illness.
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