It can be hard to find accurate information about some neurocutaneous syndromes simply because they’re relatively rare.They affect from 1 in 3,000 (neurofibromatosis) children to 1 in close to 50,000 (tuberous sclerosis) children.
Here’s what you need to know about neurocutaneous syndromes:
- Neurocutaneous syndrome is a broad term for a group of neurologic (brain, spine, and peripheral nerve) disorders.
These syndromes are progressive conditions, which means that they will grow as your child grows. While there is no cure, there are many effective ways to manage your child’s symptoms.
These diseases are lifelong conditions that can cause tumors to grow inside your child’s brain, spinal cord, organs, skin and bones.
The three most common types of neurocutaneous syndromes are:
For detailed information about your child’s specific neurocutaneous syndrome, click on one of the links above.
For more information about neurocutaneous syndromes in general, read on.
Boston Children’s Hospital’s approach
You may have heard that neurocutaneous syndromes can be challenging to treat. Sometimes that’s true. But the dedicated, compassionate staff at Children’s is incredibly well qualified to care for your child. We view the diagnosis as a starting point: Now we’re able to begin the process of treating your child — with all the means at our disposal — so that we may effectively manage the condition and allow your child to have a healthy life.
We’re known for our science-driven approach—we’re home to the most extensive research enterprise located in a pediatric hospital in the world, and we partner with a number of top biotech and health care organizations—but our physicians never forget that your child is a child, and not just a patient.
We specialize in innovative, family-centered care. From your first visit, you’ll work with a team of professionals who are committed to supporting all of your family’s physical and psychosocial needs.
Neurocutaneous syndromes: Reviewed by Mira Irons, MD
© Children’s Hospital Boston, 2010