I Have to Work Even When I'm Tired: The Reality of Caregiving...I'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 Care...I 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 Home...Living 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 Sensitivity...I 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 Diseases...Through trial and error over the years, I've learned that my body functions best on a routine schedule, regardless of what I...reactionscomments
The Rare Brain Tumor That Changed My Life: The Recovery That Followed...In June 2024, at 30 years old, I learned that I had a very large vestibular schwannoma, also known as an acoustic...reactions1comment
Rachael Rose...Rachael Rose (she/they) is a chronically ill and disabled artist, graphic designer, event and community organizer, sex educator, and patient advocate. She’s...
Community Health Leaders...In order to stay up to date on the latest treatments, drug discovery, clinical studies, and how to cope with rare disease every...
Paroxysmal Nocturnal Hemoglobinuria (PNH): What You Need to Know...Paroxysmal 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 Life...Treatment 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 Labs...If 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 Needs...I’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 Enough...Are 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 Mastocytosis...Navigating 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 Mastocytosis...I’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 Disease...Living with a rare chronic disease isn't for the faint of heart. I live with type 1 narcolepsy, and the long list...reactionscomments
