The search for comprehensive care

Since narcolepsy type 1 is a serious neurological condition, it can be hard to find ways to manage it that are right for you and your lifestyle

Finding comprehensive narcolepsy type 1 (NT1 ) management can feel like an emotional roller coaster that requires patience and determination. It can be a long journey of trial and error, and frequently can involve multiple treatment methods and lifestyle modifications. Talk to your doctor to determine what may be best for you.

Sleep hygiene

Diet

Medications

Consistent schedule

Lifestyle changes

Managing your condition can make it feel like you have to plan every second of your day

NT1 care is complex, and many people still struggle to get their symptoms under control.

Ongoing symptoms

Of 1338 people who reported diagnosis of narcolepsy by a healthcare provider and who were receiving treatment, only 3.9% reported no daytime sleepiness.

Woman with narcolepsy type 1 sleeping in bed

Juggling multiple prescriptions

In a survey of 110 people with narcolepsy, almost 60% reported taking more than one medication to manage their symptoms.

Man with narcolepsy type 1 splashing cold water on his face

Effects on daily life

Some patients with NT1 may have to adjust leisure activities. In a survey of 943 people with NT1, 76% reported that they had trouble socializing, and 57% reported that they cannot exercise or play sports.

Man with narcolepsy type 1 laying down on a blanket outdoors and throwing a baseball into the air

A person holding an iPhone with multiple alarms set

COPING AND WORK-AROUNDS

Your own set of strategies

Many people have become experts in finding creative ways for them to stay awake and alert. Coming up with coping strategies to make it through the day can take an emotional toll, but the NT1 community is resourceful and resilient.

Woman with narcolepsy type 1 posing while looking up

I literally live my life by a clock, so I'm constantly just calculating how much time do I have to allocate before I become tired.

—JUSTICE, living with NT1

Communicating with your doctor

Describing the true impact of NT1 on your life can be difficult

NT1 is rare and complex, and everyone's journey is different. While opening up to your doctor can be challenging, it's important to discuss the impact it has on you, including how your symptoms affect personal and romantic relationships. These in-depth conversations with your doctor can help you develop a more comprehensive approach to managing NT1.

~ 70%

of people with narcolepsy, out of 254 who were surveyed, reported that their healthcare provider had never asked them about the impact of narcolepsy on their social life

90%

of people with narcolepsy, out of 254 who were surveyed, reported their healthcare provider had not asked about their sex life

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IT TAKES

going beyond symptom management

TO LIVE WITH MY NARCOLEPSY TYPE 1