The Beginning of Something Big For Narcolepsy Patients

above photo by Sandro Georgi Photography

Imagine that your son was suddenly falling asleep all the time; around the house, at school, during dinner, and that when you took him to the doctor’s he suddenly collapsed.

This is the story of Monica and David Gow’s son Thomas. For the Gow family, this sent them to the ER and towards a couple misdiagnoses. What you might not have guessed is that this could also lead to something in incredible.

With concern for his symptoms mounting and no sleeping-824601_1920clear answers, a multiple sleep latency test was ordered. Thomas was finally diagnosed with Narcolepsy with cataplexy at age 11. While both of his parents carry the genetic marker, they, and their other children, were never symptomatic so Narcolepsy hadn’t before been on their radar.

Narcolepsy often presents itself through sleep attacks (the sudden inability to stay awake), nighttime wakefulness (the inability to fall/stay asleep) and hypnogogic hallucinations (vivid “dreams” while falling asleep). Cataplexy is often experienced by narcolepsy patients as well and is a sudden weakening of muscles that can be triggered by strong emotions and can cause the patient to collapse.

Narcolepsy is severely under-diagnosed and often misdiagnosed, preventing patients from obtaining medication that could help them.

Once Thomas received his diagnosis he was able to begin taking stimulants to help prevent sleep attacks and medication to avoid cataplexy. He’s created a sleep schedule and is attending school and even playing hockey and golf.

The family decided that something needed to be done for others who were seeking a diagnosis and struggling against Narcolepsy.

That determination and collaboration with Kevin Cosgrove (a medical sales representative diagnosed with narcolepsy in 2006) led to the creation of Wake Up Narcolepsy, an organization that’s donated thousands towards the study of narcolepsy. They host various events that promote awareness and raise money for the cause. They’ve raised a significant amount of funds during the Boston Marathon which they themselves participate in.

These incredible advocates have even taken their efforts to Capitol Hill and are in the midst of creating a program, “Narcolepsy Goes to School” to help educators identify symptoms of narcolepsy.

Over the course of all their accomplishments, their driving force is still Thomas, making strides without complaint in the fight against narcolepsy.

Read more here.

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