Living with narcolepsy: Tatiana's journey with this rare disorder

December 04, 2024 at 12:16 PM EST

(BPT) - Tatiana loves hiking, training their service dog, and attending open-mic nights and poetry slams. When Tatiana was unable to stay awake and started falling asleep in college classes, they knew there was something wrong.

The excessive daytime sleepiness that Tatiana was experiencing was diagnosed as narcolepsy. Narcolepsy is a rare neurological disorder that can affect all aspects of a person's daily life, including fighting to stay awake throughout the day, falling asleep without warning, or feeling sleepy in situations that are less active such as watching TV or riding in a car. It is estimated that 170,000 people in the United States live with narcolepsy.

Asim Roy, MD, who is the Medical Director of the Ohio Sleep Medicine Institute and a board-certified sleep specialist and neurologist, said, "Narcolepsy is often undiagnosed or misdiagnosed. Many people experience symptoms of narcolepsy for years before receiving an accurate diagnosis of narcolepsy."

Living with narcolepsy and common misconceptions

Tatiana wearing a long white dress and colorful cardiagn walking a path in the forrest.

All people living with narcolepsy experience excessive daytime sleepiness, which is defined as the inability to stay awake and alert during the day or the persistent feeling of tiredness. For Tatiana, excessive daytime sleepiness was being unable to stay awake in sedentary situations like sitting down in class or waiting for appointments, which became a very big obstacle.

"Unfortunately, there are several misconceptions about people living with narcolepsy, many of which are not true. Narcolepsy symptoms can be hard for others to fully understand; therefore, people living with narcolepsy can experience stigma as a result of this," Dr. Roy explained. "Although we all get tired, people living with narcolepsy feel an overwhelming sense of sleepiness and have to fight to stay awake and alert throughout the day, and may even fall asleep without warning," he added. "This can be hard for people because of the impact it can have not only on their own daily life, but also their relationships with others." Dr. Roy added, "Their excessive daytime sleepiness can cause them to withdraw socially and arrive late or fully miss events, which can further lead to strained relationships if not understood by others."

Searching for treatment options

Tatiana first learned about WAKIX^® (pitolisant) by doing their own research and was first interested in WAKIX because it's not a stimulant. Tatiana was excited to talk to their healthcare provider to learn more about WAKIX and if it might be a good option for them. They asked their healthcare provider, and he explained possible side effects and set expectations for getting started on treatment. After Tatiana's healthcare provider explained how to get started on treatment, including the titration period, and the importance of communication particularly during the first couple months, they started WAKIX in 2019.

"When I prescribe WAKIX to a patient, I make sure I set their expectations for getting started, including the titration period and that it might take up to 8 weeks for them to achieve a response," Dr. Roy noted. "I start patients at a low dose and then may increase their dose each week until we get to the right dose for them." Dr. Roy added, "WAKIX is thought to work differently through histamine levels in the brain."

"It's important that I inform my patients that WAKIX is not a stimulant and let them know that the way their body feels when taking WAKIX may be different from medications they've taken in the past," Dr. Roy explained. "I also discuss the potential side effects, which, for adult patients, the most common are insomnia, nausea, and anxiety. I also mention other potential side effects and things they can expect while on treatment," explained Dr. Roy. "I emphasize the importance of communicating with me as they are starting on treatment so we can discuss how they're feeling, what improvements they're seeing, and what side effects they might be experiencing. I also go over any questions they might have for me."

Importance of support and community

Tatiana in a white cocktail dress holding a microphone and reading her book to a group of people at a venue.

Tatiana started to notice WAKIX was working when they had more wakefulness throughout the day and "weren't falling asleep as uncontrollably as often." Since they started taking WAKIX, Tatiana noticed that they were feeling less sleepy when riding in a car. "When I went on a road trip with my girlfriend, I was actually able to stay awake and have conversations with her," shared Tatiana. They also felt less sleepy when doing activities they enjoy, like writing, reading, painting, and hiking. In August 2024, Tatiana had their poetry book titled "Wild Brujeria" published. In this book, Tatiana wrote about their life and has written multiple poems about living with narcolepsy.

Tatiana mentioned how the support of others in the narcolepsy community has also helped them through their journey and provided a source of hope and interpersonal support. "I show up and can help support people on my good days, and I can be supported on my bad days. Narcolepsy, it's an up and down kind of thing…no one day looks the same. And it's just having a community of people that understand and can support me and accept me, it's been invaluable to my life, and I hope to pay it forward. Living with narcolepsy isn't always easy. But for now, I'm thankful to have a treatment plan that is right for me," Tatiana explained.

If you or someone you know is living with narcolepsy, speak with a healthcare provider to see if WAKIX could be an option. Read more about WAKIX below. To see videos about the experiences of Tatiana and others living with narcolepsy who are taking WAKIX, visit WAKIX Personal Stories.

Indications and Usage

WAKIX is a prescription medicine used to treat:
• excessive daytime sleepiness (EDS) or cataplexy in adults with narcolepsy.
• excessive daytime sleepiness (EDS) in children 6 years of age and older with narcolepsy.

Important Safety Information

Do not take WAKIX if you are allergic to pitolisant or any ingredient in WAKIX, or if you have severe liver disease.

WAKIX can cause a change in the electrical activity of the heart known as QT prolongation. This is a heart rhythm problem that can lead to an abnormal heartbeat. You have a higher chance of getting QT prolongation if you have certain heart or other medical conditions, or if you take WAKIX with certain medicines. Tell your healthcare provider right away if you have a change in your heartbeat or if you feel dizzy or faint while taking WAKIX.

Tell your healthcare provider about all your medical conditions, including if you have any heart, liver, or kidney problems, or problems with blood levels of your electrolytes, such as potassium or magnesium.

Tell your healthcare provider about all the medicines you take or plan to take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Taking WAKIX with certain medicines may cause side effects or affect the way each other works.

Hormonal birth control methods may not work while taking WAKIX. Use an alternative non-hormonal birth control method during treatment with WAKIX and for at least 21 days after stopping WAKIX.

Tell your healthcare provider if you are pregnant or planning to become pregnant. You are encouraged to enroll in the WAKIX pregnancy registry if you become pregnant while taking WAKIX. The registry collects information about the health of you and your baby. To enroll or obtain information from the registry,
call 1-800-833-7460.

The most common side effects of WAKIX in adults include insomnia, nausea, and anxiety. The most common side effects of WAKIX in children include headache and insomnia. These are not all the possible side effects of WAKIX. Call your healthcare provider for medical advice about side effects.

It is not known if WAKIX is safe and effective to treat excessive daytime sleepiness in children under 6 years of age with narcolepsy or to treat cataplexy in people under 18 years of age with narcolepsy.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. You can also report negative side effects to Harmony Biosciences at 1-800-833-7460.

Please see accompanying Full Prescribing Information.

WAKIX is a registered trademark of Bioprojet Europe, Ltd.

Harmony Biosciences and logo are trademarks of Harmony Biosciences Management, Inc. and are used herein by permission.

US-WAK-2400547/Nov 2024

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Living with narcolepsy: Tatiana's journey with this rare disorder

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