Infantile Spasms Awareness Week

This subject was important for me to talk about today.

One of the tell-tale signs that pointed out the fact that I had Tuberous Sclerosis Complex (TSC) as a baby was my having infantile spasms at around 7-9 months old.

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.

This awareness week is a joint effort between the Tuberous Sclerosis Alliance & The Child Neurology Foundation.  More information about the awareness week can be found here.



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