This document is a printable handout for parents of children with the CCM3 genetic mutation to give to teachers and school personnel.

1. What is CCM3?
For teachers and school personnel
CCM3 is a genetic mutation that can cause people to develop cerebral cavernous angiomas.
Cerebral cavernous angiomas are blood vessel defects in the brain and spinal cord that look
like mulberries. Cavernous angiomas are leaky, can grow quite large, and can cause
seizures, headaches, and stroke-like symptoms.
This particular mutation is believed to be ultra-rare. There are only 30-50 people in the
United States who are diagnosed and an equivalent number in Europe.
There are a range of symptoms that can accompany this illness. Some people are mildly
affected and have few symptoms throughout their life. Others may be more severely
affected with multiple hemorrhages that can lead to brain surgeries at very young ages,
including in infancy. Approximately 50% of people with the CCM3 genetic mutation are
likely to have their first hemorrhage before age 15. Children will develop more cavernous
angiomas over their lifetime and a hemorrhage can occur at any time. There are currently
no medications to treat the cavernous angiomas themselves, although some children may
be on medication to treat symptoms caused by the cavernous angioma such as seizures,
anxiety disorders, or pain.
A child’s deficits, if any, are determined in large part by the location of the active cavernous
angiomas and of previous brain or spinal surgeries. In general, a teacher can expect that a
child with the CCM3 mutation may be more easily fatigued than other students; fatigue is
an effect of any kind of brain trauma. While children with CCM3 are more likely to have
attention deficit than other children, treatment with stimulants for these children is
controversial because the effect of these medications on cavernous angiomas is not known.
Children with the CCM3 genetic mutation are also more likely to be over-stimulated by
typical school situations which may result in diminished emotional or behavioral control. We
encourage frequent neuropsychological and educational testing of children with the CCM3
mutation to identify any existing or developing learning issues including attention deficit or
specific learning disabilities.

2. A child with the CCM3 genetic mutation may have frequent medical appointments. They can
anticipate annual or more frequent MRI’s or CT scans as well appointments and testing with
neurologists, neurosurgeons, and other specialists as warranted. They may be in physical,
occupational, vision, speech, or social skills therapy. They may undergo EEGs or sleep
studies.
As a teacher, please inform the parent if the student:
1. Exhibits any seizure-like behavior including moving an arm or a leg without having
conscious control or having a “stop-and-stare” minute
2. Has increased difficulty with attention or becomes unusually irritable or anxious
3. Is more fatigued than usual
4. Has new onset language, writing, or math difficulties
It is a medical emergency if the student:
1. Complains of a severe headache
2. Has an episode of projectile vomiting
3. Loses or has sudden decrease in a function – double vision or blind spots, limb
weakness or numbness, one-sided facial droopiness , inability to talk
4. Has a tonic clonic (grand mal) seizure without a previous history of seizure
Parents of children with the CCM3 genetic mutation appreciate your help in monitoring their
children. Because of the amount of time our children spend with you, you may be the first
one to notice a change that indicates the beginning of a hemorrhage. While we would all like
our children to have as normal a childhood as possible, preserving health and implementing
adaptations that can benefit our children as students are most important.