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
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
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...reactions26comments
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
Finding Friendship in the Rare Disease CommunityWhen I was first diagnosed with a rare disease, I struggled to find a sense of community. Like many others, I had...reactions1comment
What If I Hadn't Been Born With a Rare Disease?There's a Marvel Comics series called "What If...?" It offers mind-bending scenarios about what could have happened if one little thing was...reactionscomments
Questions to Ask Your Doctor About Immune ThrombocytopeniaAppointments go fast. If you have ever left one and thought of your real question in the parking lot, you are not...reactionscomments
Newly Diagnosed With ITP: What to ExpectHearing that you have immune thrombocytopenia (ITP) can be unsettling, especially if you had never heard the name before. About 50,000 people...reactionscomments
Treatments for ITPIf your ITP is mild, you may not need treatment at all. Mild ITP generally means your platelet count is above 30,000...reactionscomments
How Is ITP Diagnosed?Getting an answer can take a while with immune thrombocytopenia (ITP), and that wait can be frustrating. There is no single test...reactionscomments
Signs and Symptoms of ITPImmune thrombocytopenia (ITP) affects how your blood clots, so most of its symptoms involve bruising and bleeding. Many people with ITP have...reactionscomments
Immune Thrombocytopenia (ITP): What You Need to KnowImmune thrombocytopenia (ITP) is a platelet disorder that develops when your blood does not clot the way it should because of a...reactionscomments
The Power of the Words We Tell OurselvesI didn't fully realize how much my physical health impacted my mental health until recently. Sure, I know I've struggled with depression...reactions5comments
Community Views: The Biggest Misconception About My Rare DiseaseHaving a rare disease poses problems many people can not imagine. It can be discouraging to share your experiences when others do...reactionscomments
Rare Disease and AI: How Are You Using It for Your Health?Something has shifted in the last couple of years. A late-night symptom search now sometimes starts with an AI summary before it...reactionscomments
Job-Seeking as a Caregiver for a Child With a Rare DiseaseFinding a job with a supportive and understanding employer can be an ongoing challenge for those of us raising a child with...reactionscomments
