How to Manage Fluctuating Symptoms With Rare DiseaseHave you noticed that your symptoms fluctuate or change, sometimes unexpectedly, as a person with a rare disease? I have type 1 narcolepsy with cataplexy, and it feels like my...Reactions0reactionsComments1 comments
Journey to a Rare Disease DiagnosisGetting a new rare disease diagnosis can be a difficult undertaking. Some conditions, such as narcolepsy, are so misunderstood that it can take years to get an official diagnosis! The...Reactions0reactionsComments20 comments
Disclosing Rare Disease NeedsWhen living with a rare disease, how often do you disclose your needs? Daily? Weekly? Monthly? Living with a rare disease usually means that other people aren't well-informed about my...Reactions0reactionsComments2 comments
The Pain of Misunderstanding Recently, I thought I had found a group of friends who would stick by my side, who understood what I was going through, or at least tried to. I live...Reactions0reactionsComments7 comments
Reach for the STARS! Why Media Representation MattersRecently, I had the privilege of attending Portland Pride. The weekend was jam-packed with all sorts of events and parties celebrating the beautiful and diverse LGBTQIA+ community. As a queer...Reactions0reactionsComments3 comments
My Strategies for Living With a Rare Disease Long TermLiving with a chronic rare disease is not for the faint of heart. For most of us, there is no finishing line. Hard days can drag into bad days, which...Reactions0reactionsComments12 comments
My First Rare Disease ConferenceRecently, I had the opportunity to attend a national conference for the rare disease that is narcolepsy. This conference had a plethora of people attending, including people with narcolepsy (such...Reactions0reactionsComments2 comments
When You Don’t Want Advice on Your Rare DiseaseHow many times have you had to sit and listen to someone give you advice on living with your rare disease? Probably a lot! From doctors to family members to...Reactions0reactionsComments3 comments
Do You Take Rare Disease Rest Days?As a person who suffers from a rare and chronic disease, every day is a calculation dependent on my energy levels and the energy required to get things done. When...Reactions0reactionsComments2 comments
My Rare Disease Does Not Make Me a BurdenI recently came across a journal article discussing the "challenges" of parenting a child with my rare disease. This triggered feelings of shame and anger within me. I asked myself...Reactions0reactionsComments1 comments
When Rare Disease Needs Don't Make Sense to OthersLiving with a rare disease comes along with many complications – some medical, some financial, some psychological, and some social. In my experience, the social aspects of living with a...Reactions0reactionsComments4 comments
Fighting for Rare Disease Medication CoverageLiving with a rare disease comes with a variety of complications. Some of these complications are physical due to the medical nature of our condition. Other complications are social or...Reactions0reactionsComments1 comments
Rare Diseases and Comorbidities: Which One Is Causing My Symptoms?!Living with a rare disease can come with a variety of comorbidities. It is difficult to know what to expect in terms of comorbidities for a person with a rare...Reactions0reactionsComments0 comments
Rare Disease InternationalAs a person living with a rare disease, it can be difficult to find other people who also suffer from the same condition. Not knowing people who can relate to...Reactions0reactionsComments0 comments
Coordinating Care With a Rare DiseaseMany general medical practitioners are not educated about rare diseases. This can make it difficult for people with rare diseases to get access to diagnosis and treatment. It can also...Reactions0reactionsComments1 comments
Recovering From Advocacy BurnoutAdvocacy burnout can look different for different people. Burnout can present itself in many different ways. Some possible signs of rare disease advocacy burnout can include excessive fatigue, lack of...Reactions0reactionsComments0 comments
Art As Rare Disease Advocacy I have only been living with narcolepsy since my college years. When I discovered what kind of rare disease I had, at first, I was genuinely confused. I didn't know...Reactions0reactionsComments7 comments
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 over your own health. I live with narcolepsy...Reactions0reactionsComments0 comments
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 of things it impacts in my life is...Reactions0reactionsComments0 comments
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 the holidays off from our rare diseases! Living...Reactions0reactionsComments3 comments
