Dr MJ Bazos MD,
Patient Handout
Tuberous Sclerosis
and Your Baby
What is tuberous sclerosis?
Tuberous sclerosis causes growths in the brain,
eyes, heart, kidney, skin or lungs. These growths are usually benign (not
cancer). The first signs may be seizures and spots on the skin. Some people who
have tuberous sclerosis may have learning problems or seizures that are hard to
control.
Tuberous sclerosis isn't common, but it isn't
rare either. Up to 40,000 people in the United States have it. The disorder
occurs in both sexes and in people of all races and ethnic groups.
How did my child get this disorder?
About half of the time, tuberous sclerosis is
passed from a parent to a child, or inherited. If one parent has tuberous
sclerosis, every child born to that parent has a 50% chance of inheriting it.
However, in about half the children who have
tuberous sclerosis, the mother and father have no signs of it. It seems that
sometimes a normal gene changes (mutates) to the abnormal form that causes
tuberous sclerosis.
Doctors have no test to identify a person who
has the tuberous sclerosis gene if that person has no signs of it.
If parents who have one child with tuberous
sclerosis want to have another child, they should talk with their family doctor.
The family doctor can refer them to a genetic counselor or medical geneticist
who can help them decide what to do.
What are the signs of tuberous
sclerosis?
Your doctor may suspect tuberous sclerosis if
your baby has a condition called cardiac rhabdomyomas (benign heart tumors) at
birth or starts to have seizures, especially a kind of seizure called infantile
spasms.
However, your doctor may not be able to tell
that your child has tuberous sclerosis until these signs show up:
- White spots on the skin (called hypopigmented
macules) that glow under a special lamp
- A rash on the face (called facial angiofibromas)
- A mental disability
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