A Parent’s Perspective on Narcolepsy

By Kim Grady

Ben is one of the “lucky” ones. He was diagnosed at the young age of 7 with narcolepsy and cataplexy. I say lucky because it only took two months for him to be diagnosed. You see, it’s not uncommon for many years to pass before this dreadful sleep disorder is diagnosed. We knew something wasn’t right when we watched as he’d repeatedly fall asleep playing with Matchbox cars and friends, at dinner, and in school.

Since Ben’s diagnosis, 9 years ago, I have been on a mission to raise awareness amongst doctors, insurance companies and anyone who “controls” the treatment for people with narcolepsy. That is why I am so thrilled that we at last have the opportunity to tell the FDA how narcolepsy with cataplexy affects Ben’s life and the lives of his loved ones.

KG quoteThe FDA’s Patient-Focused Drug Development Initiative is vital for helping all those with narcolepsy foster better treatment options.  At best, the medications approved for treatment of narcolepsy offer only temporary relief from its debilitating symptoms. For many patients, multiple treatments are required including medications and rigid lifestyle adjustments. For others, available therapies don’t work well or are out of reach because of medical complications or financial limitations. Those with narcolepsy deserve better options so they can achieve their full potential.

Sleeping half your life, as so many people with narcolepsy do, is no way to live. The myths and misunderstanding by doctors and the public adds to the burden patients and their loved ones carry. By sharing our stories with the FDA and helping them understand just how challenging it is to live with narcolepsy,  we will increase our chances of one day getting treatment that  will be more effective and cause fewer side effects.

As Ben has said, “I know there are worse things to have, but narcolepsy is pretty bad.  There are certain jobs I will never be able to do, like serve in the military – which I really want to do. Driving a car will be difficult, and I love cars!  Having narcolepsy does restrict my life.” As his mother, every day I see the social embarrassment and his struggle to keep up academically. And his cataplexy withholds him from laughing for fear of falling down during an attack.

The medications Ben has to take are many, and because research has been limited – especially on children with narcolepsy – we don’t know what long-term effects of the disease may affect him later in life. It’s time our government and the pharmaceutical companies understand how difficult it is to live with narcolepsy and cataplexy. We must do what we can to raise awareness and understanding.  For Ben and the other 200,000 Americans with narcolepsy, please help Unite Narcolepsy, so better treatments will become available, and one day they will be cured of this devastating disease.
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Kim Grady is an experienced financial sales professional with over 10 years experience. She currently works with several non-profits on fundraising and development projects. Working with Wake Up Narcolepsy as the organization’s Community Outreach Coordinator, Kim has implemented a new program to raise awareness in the Massachusetts school community called, “Narcolepsy Goes to School.” She has also been active in launching the Unite Narcolepsy initiative to educate, engage and empower the narcolepsy community to participate effectively in the FDA’s Patient-Focused Drug Development Initiative.