Keeping Your Family Connected When Raising a Child With a Rare DiseaseEditor's Note: This article was written by Elle Cole and originally appeared on our partner site RareDisease.net. Raising a child with a rare disease extends beyond medical hurdles – it...Reactions0reactionsComments0 comments
Hot Sleepy Girl SummerWhile I do not have a summer break from work like I did in school, a lot of activities still happen during the summer: friends inviting me to hang out...Reactions0reactionsComments0 comments
Parental Partnership: Supporting Families With a Child Affected by a Rare DiseaseEditor's Note: This article was written by Elle Cole and originally appeared on our partner site RareDisease.net. When I became a mother at 26 years old and my husband a...Reactions0reactionsComments0 comments
Beyond Sleep: Navigating Memory Loss and Aging with NarcolepsyI not long ago had a poignant conversation with a friend who, like me, suffers from narcolepsy. Our discussion centered around the common yet distressing issue of fatigue and, more...Reactions0reactionsComments9 comments
Narcolepsy Rest DaysI keep wondering, when will I feel better? I keep waiting for life to get easier with narcolepsy. So far it hasn’t. Something that helps me recover from the worst...Reactions0reactionsComments2 comments
Transitioning From Pediatric to Adult Care With a Rare DiseaseYoung people living with a rare disease are living longer than ever. That’s the good news. The less-good news is that not many places exist for teens and caregivers to...Reactions0reactionsComments0 comments
How NOT to React to a Cataplexy AttackCataplexy is a sudden, brief loss of muscle tone often triggered by strong emotions. If you have never witnessed a cataplexy attack, it can be difficult to describe. Despite suffering...Reactions0reactionsComments0 comments
Narcolepsy’s Effects on ChildrenNarcolepsy is often associated with adults. But narcolepsy can also affect children, although it is quite rare. Narcolepsy often impacts children differently than it impacts adults. This can cause unique...Reactions0reactionsComments0 comments
When You’re ALWAYS Tired…A typical day with a sleep disorder like narcolepsy can look like this… Wake up. Lay in bed. Bask in the morning sun. Wish you could have one morning feeling...Reactions0reactionsComments6 comments
Narcolepsy Letter to My 21-Year-Old SelfI went for lunch recently with a dear friend, someone I've known since I was 11. As we sat reminiscing, she posed an intriguing question: "What would you say to...Reactions0reactionsComments0 comments
Reading With NarcolepsyI love everything about books. Always have. From the crisp smell of their pages, to the buttery-soft feel of their words beneath my fingers, to the worlds they allow me...Reactions0reactionsComments0 comments
Explaining Narcolepsy to OthersSharing a chronic diagnosis with others often feels scary. A narcolepsy diagnosis brings added challenges. Many people do not understand narcolepsy. Others have wrong ideas about the disease. Sometimes, it...Reactions0reactionsComments5 comments
Fighting for Narcolepsy Medication CoverageHave you ever had to prove to insurance that your narcolepsy medication is worth covering? This is unfortunately a common issue that many people in our community end up having...Reactions0reactionsComments0 comments
Worrying About Graduate School and Accommodations for Idiopathic HypersomniaIn December 2023 I graduated with my Bachelor's degree in English. It wasn't easy being a college student with idiopathic hypersomnia. I struggled at maintaining a busy schedule since I...Reactions0reactionsComments0 comments
How It Feels To Experience A MicrosleepLiving with narcolepsy is like living with an extra, constant shadow by your feet, not just as a medical condition, but as a relentless companion in my life. It's more...Reactions0reactionsComments5 comments
I'm Proud of You“I’m proud of you,” my friend said, smiling. And my stomach dropped. I’d taken extra stimulants, four caffeine pills, and two cups of coffee to get through this day of...Reactions0reactionsComments7 comments
10 Questions to Ask Your Doctor When You Are Newly DiagnosedIt is often hard to know what to ask – or even where to begin – when you have questions about a new diagnosis. Many community members on this site...Reactions0reactionsComments0 comments
A Journey Navigating Life Without MedicationI don't even remember how long I've been without medication. I remember thinking about how important it was to me and how important medication is to my life and my...Reactions0reactionsComments1 comments
International Narcolepsy OutreachAs a person living with narcolepsy, I often feel the pressure of loneliness that comes along with living with a rare disease. Some days it feels like no one understands...Reactions0reactionsComments0 comments
How TED Talks Helped Me Cope With NarcolepsyIn my journey with narcolepsy, TED Talks have been a beacon of inspiration, not just as a source of information but as a vital tool in managing my mental health...Reactions0reactionsComments0 comments