Tara’s journey: Navigating life as a young adult living with narcolepsy

When she was a full-time college student, Tara was also pretty busy with two part-time jobs working in healthcare, being a dog mom, and spending time with her two nephews and her niece. Her schedule was jam-packed. Tara described feeling like she was “tired all the time” and just wanted to sleep. “It would be so hard to get up and go to work and stay awake at work,” she shared. Tara didn’t know at the time, but she was experiencing a symptom of narcolepsy called excessive daytime sleepiness (EDS).

Narcolepsy is a rare neurological disorder that affects approximately 170,000 people living in the United States. All people living with narcolepsy have EDS, which is defined as the inability to stay awake and alert during the day or the persistent feeling of tiredness. Tara’s relationships with friends and family, daily life, and work were all impacted by EDS. “There’s unfortunately a societal misconception that people living with narcolepsy lack motivation to do things, are lazy, or are depressed,” noted Ellen Wermter, FNP-BC, a sleep medicine specialist at Restorative Sleep Medicine in Charlottesville, VA. For Tara, she shared, “Simple things like cooking, showering, hanging out with friends—they were all impacted by the excessive daytime sleepiness. I dreaded doing almost anything. I just wanted to sleep.”

In addition to excessive daytime sleepiness, Tara would often drop things or randomly fall. She dismissed these signs, thinking she was just being clumsy, but she was actually experiencing another narcolepsy symptom called cataplexy. Cataplexy is defined as the sudden onset of weak or paralyzed muscles, usually brought on by strong emotions or certain situations. It can cause the person’s knees to buckle or collapse completely; but more often it affects specific areas of the body such as the hands or eyelids. Wermter noted, “In my experience, many people may not realize that what they are experiencing is cataplexy and that it is related to their narcolepsy.”

When Tara first received her diagnosis of narcolepsy with cataplexy, part of her was relieved knowing it “actually was something and wasn’t just in [her] head.” With that sense of relief, Tara also felt a little nervous not knowing what was next.

Searching for a treatment

Tara first learned about WAKIX^® (pitolisant) after someone mentioned it in an online support group, and she also saw it on social media. What interested Tara most about WAKIX was that it wasn’t a controlled substance.

“WAKIX is FDA approved to treat excessive daytime sleepiness (EDS) or cataplexy in adults with narcolepsy and to treat EDS in children 6 years of age and older with narcolepsy,” explained Wermter. “It is also the first and only FDA-approved treatment for people with narcolepsy that is not a controlled substance,” she added. A controlled substance is defined as a drug or chemical that is regulated by the government based on its potential for abuse and dependence. “In a clinical study in adults, WAKIX did not show potential for abuse, similar to placebo, which is also known as a sugar pill,” Wermter further explained.

Tara asked her healthcare provider about WAKIX, and they had discussions that led to her starting WAKIX in 2020.

Partnering with your healthcare provider

When Tara began discussions with her healthcare provider about starting WAKIX, he mentioned that there would be a titration period where they start out with a lower dose and then work up to find the dose that was right for her. They also discussed expectations from treatment and possible side effects with WAKIX.

When starting a new medication, it’s important to talk with your healthcare provider so they can help you understand what to expect. “When I start a new patient on WAKIX, I tell them it‘s important to be in communication and be honest about how they’re feeling. I explain that we’ll start at a lower dose and then will increase the dose for the next two to three weeks until we find the dose that is right for them,” Wermter explained. “I want my patients to understand that everyone responds to medications differently, and for some patients it may take up to 8 weeks to achieve a clinical response. As such, it’s important they give WAKIX a chance to work.”

Tara started to notice that WAKIX was working when her friends and family noticed that she had more wakefulness. “They were excited for me,” she shared. "To have that kind of support around me felt reassuring that I wasn’t all alone."

Finding support is important

An important aspect of navigating life with narcolepsy is the support from others. Tara found this through online support groups with others living with narcolepsy and felt that this is something that helped her in navigating through day-to-day life with narcolepsy. Since her diagnosis, Tara has been an active advocate in the narcolepsy community. “It's important to me to be an advocate in the narcolepsy community and share my personal story because I want to help others know that they're not alone and helpful resources are available,” Tara 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 Tara 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 name and logo are registered trademarks.
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US-WAK-2400684/Oct 2024