How to Get a Diagnosis for a Rare Disease...Getting a new rare disease diagnosis can be a long and difficult journey. Some conditions, such as narcolepsy, are so misunderstood that...reactions26comments
Symptoms and Triggers of Indolent Systemic Mastocytosis...Indolent 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 You...Indolent 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 I Start Difficult Conversations About My Rare Disease...When 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 Community...When I was first diagnosed with a rare disease, I struggled to find a sense of community. Like many others, I had...reactionscomments
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 Thrombocytopenia...Appointments 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 Expect...Hearing 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 ITP...If 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 ITP...Immune 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 Know...Immune 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 Ourselves...I 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 Disease...Having 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 Disease...Finding a job with a supportive and understanding employer can be an ongoing challenge for those of us raising a child with...reactionscomments
Diet and Exercise Tips for Your AOSD Treatment Plan...Adult-onset Still’s disease (AOSD) is a rare type of arthritis that causes joint pain, swelling, and systemic inflammation. Healthcare providers typically treat...reactionscomments
