Living for the Good ThingsLiving with a rare disease comes along with a lot of difficulties. It can be scary at times, too, not having control...reactionscomments
Personal Grooming With a Rare DiseaseLiving with a rare chronic disease isn't for the faint of heart. I live with type 1 narcolepsy, and the long list...reactionscomments
My Rare Disease Holiday Survival GuideLiving with a rare disease like narcolepsy means that I have to live my life around my symptoms. Unfortunately, we don't get...reactions3comments
How Nature Therapy Helps Me Live Better With a Rare DiseaseAccess to lush, green natural spaces feels like a privilege to me. As a person living with a rare disease, narcolepsy, it...reactionscomments
Rare Disease and Food Insecurity Have you ever been so affected by your rare disease that you weren't able to go grocery shopping, leaving your pantry empty...reactionscomments
Building a Rare Disease Treatment Plan Brick-by-BrickIt can take years to build an effective treatment plan to treat a rare disease like narcolepsy. I know this from my...reactionscomments
Journey to Chronic Rare Disease TreatmentLiving with a rare disease is difficult. Getting access to treatment for rare diseases can be inaccessible for many. Many rare disease...reactionscomments
3 Ways I Combat BurnoutAs a person living with a rare and chronic disease, I have much less energy than the average person. Even keeping up...reactionscomments
How I Start Difficult Conversations About My Rare DiseaseWhen living with a rare disease, setting boundaries around physical limitations is important. As a person with narcolepsy, I've had to learn...reactions11comments
Thriving with a Rare Disease: 5 Personal Strategies for Stress ReductionLiving with a rare disease can be stressful in itself. There's the history of medical trauma, for example, from being put through...reactionscomments
Managing Stress and Chronic IllnessStress is one of those factors that can really impact our overall health. Stress can affect the body in many ways, with...reactionscomments
Living an Authentic Life With a Rare DiseaseI was diagnosed with narcolepsy halfway through my college career. My disease onset had been quick. Just a few weeks after getting...reactions5comments
SSI and Medicaid: Moving to a Place Based on Healthcare"What do you mean I'm not eligible for Medicare?" I groan into the phone. "I'm on Social Security, aren't I?" At this...reactionscomments
What to Expect During a Disability Hearing (In America)My phone buzzed angrily. It was 20 minutes after the hour, and I’d been scrambling about frantically. I was searching for documents...reactions3comments
When Illness Calls: A Tale of One Rare DiseaseAs a person with narcolepsy type 1, I am used to my life not looking like other people's. My average day with...reactionscomments
Coping With Specialty Medication MayhemIf you have a rare disease, you are probably aware of the struggle often involved in finding treatment for rare diseases. Even...reactionscomments
New Year… Same Old Rare DiseaseThe holidays have finally passed. Now it is time to start preparing for the upcoming new year. Setting goals for personal improvement...reactionscomments
So You Have a Rare Disease… Now What?Being diagnosed with a rare disease can be shocking, even scary! When I was diagnosed with Narcolepsy Type 1, I was relieved...reactions7comments
