I Have to Work Even When I'm Tired: The Reality of CaregivingI'm convinced that one of the universal realities of parenting is having to keep going, even when you're completely exhausted. Add a...reactionscomments
The Mindset Shift of Proactive CareI was born with a rare, chronic condition that shaped my youth in very dramatic ways. As an infant, my pain threshold...reactionscomments
Taking Control of Your PI Treatment at HomeLiving with primary immunodeficiency (PI) can feel like a life managed by the schedule of your infusions. For years, intravenous immunoglobulin (IVIG)...reactionscomments
Summer With Sun SensitivityI love summer — the sunny weather, staying light outside later, and vacations. I live in an area filled with parks, trails...reactionscomments
The Power of Predictability: How Routine Helps Manage My Rare DiseasesThrough trial and error over the years, I've learned that my body functions best on a routine schedule, regardless of what I...reactionscomments
Paroxysmal Nocturnal Hemoglobinuria (PNH): What You Need to KnowParoxysmal nocturnal hemoglobinuria (PNH) is a rare blood disorder. You may never have heard of it before your diagnosis. So what is...reactionscomments
Exploring PNH Treatment Options: Finding Disease Control That Fits Your LifeTreatment for paroxysmal nocturnal hemoglobinuria (PNH) has changed a great deal. Today, there are more PNH treatment options than ever. Knowing how...reactionscomments
Diagnosing and Monitoring PNH: Why How You Feel Matters as Much as Your LabsIf you have paroxysmal nocturnal hemoglobinuria (PNH), you probably get a lot of blood tests. These tests show your care team what...reactionscomments
One Essential Strategy Every Rare Disease Caregiver NeedsI’ve shared before about taking on a new role: not only am I a rare disease patient, but I am now also...reactionscomments
Navigating Major Treatment Decisions: Why "Good Enough" Might Not Be EnoughAre you on one or more medications? If you are asked, "How are things going with your treatment?" on a 1-to-10 scale...reactionscomments
Explaining Rare Disease: How to Talk About Indolent Systemic MastocytosisNavigating the social dynamics of any chronic illness can be a challenge. So it probably doesn’t come as a surprise that trying...reactionscomments
6 Things I Wish I Knew When I Was Diagnosed with Systemic MastocytosisI’ve always joked that a new diagnosis should come with a handbook for how to navigate your body and your life. While...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
Lessons Learned in Navigating Medical DebtWith any medical event, but especially when it's a chronic illness or rare disease, such as paroxysmal nocturnal hemoglobinuria (PNH), medical debt...reactions12comments
Newly Diagnosed With Indolent Systemic Mastocytosis: What to ExpectBeing newly diagnosed with indolent systemic mastocytosis (ISM) can bring relief and worry at the same time. There’s finally a name for...reactionscomments
How Is Indolent Systemic Mastocytosis Diagnosed?Getting to an indolent systemic mastocytosis (ISM) diagnosis often takes a long time. The non-specific nature of ISM symptoms might mean that...reactionscomments
Symptoms and Triggers of Indolent Systemic MastocytosisIndolent systemic mastocytosis (ISM) symptoms can be hard to pin down. They show up in different parts of the body, they can...reactionscomments
Indolent Systemic Mastocytosis: What It Is and What It Means for YouIndolent systemic mastocytosis, usually shortened to ISM, is a rare immune condition affecting an estimated 1 in 10,000 to 20,000 people worldwide...reactionscomments
How to Get a Diagnosis for a Rare DiseaseGetting a new rare disease diagnosis can be a long and difficult journey. Some conditions, such as narcolepsy, are so misunderstood that...reactions34comments
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
