This subject was important for me to talk about today.
Back then, not much was known about TSC. Luckily though, my parents found a pediatric neurologist that recognized them (the spasms) & the disease both. I credit his early intervention as a key of saving me from a much worse fate.
After he started me on phenobarbital & eventually dilantin, (which doesn’t work for most children anymore), my infantile spasms stopped. I had my last seizure at the age of 3, & haven’t had one since (knock wood). However, I remain vigilant because there is always the possibility that later in adulthood my seizures could return.
I am posting the above video in honor of Infantile Spasms Awareness Week. It features one of my TSC heroes & friends, Dr. Elizabeth Thiele. Dr. Thiele, (who is director of the Herscot Center for Tuberous Sclerosis Complex at Massachusetts General Hospital), has helped me & several others with TSC for most of her medical career. She is both a gifted clinician & tireless researcher in the fight. Above all, she is just a relatable, funny, & compassionate person.
This video is also a good resource for healthcare professionals seeking to learn more on the subject.