My First Time at the ER with HAEAfter I was officially diagnosed with hereditary angioedema (HAE), there was a bit of time that lapsed before I was able to...reactionscomments
My First HAEA SummitThis time last year, I was at my very first HAEA Summit, and it was arguably the best thing I did after...reactionscomments
A Letter to the Newly Diagnosed with HAETo the newly diagnosed, First and foremost, you are allowed to feel however you feel about this new diagnosis. It's new. It's...reactionscomments
HAE 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
Finding a Support Person for Doctor AppointmentsPeople with chronic health conditions like Hereditary Angioedema often face complex treatment plans and multiple doctor visits. Brain fog, fatigue, and problems...reactionscomments
Forged in the Gaps: The Real Cost of Surviving Healthcare BureaucracyThere is a moment many people with rare disease and chronic illness eventually reach. It’s the moment you realize your survival depends...reactionscomments
How I Got Diagnosed With HAEI went a whole 26 years without ever having a swelling attack. I was still well acquainted with the disease though, because...reactionscomments
Turning Pain into Advocacy: My Journey with Hereditary AngioedemaThe hardest part of living with an undiagnosed rare disease wasn't the pain. It was spending years wondering whether anyone would ever...reactionscomments
Advocating for Yourself With Your DoctorThe process of being diagnosed with a chronic health condition can be long and difficult. People with Hereditary Angioedema often have a...reactionscomments
10 Questions to Ask Your Doctor When You Are Newly DiagnosedIt is often hard to know what to ask, or even where to begin, when you have questions about a new diagnosis...reactionscomments
Getting a Second OpinionA diagnosis that does not feel right or a misdiagnosis can be overwhelming. You may have many questions about your diagnosis. You...reactionscomments
Coping With a New DiagnosisReceiving a new medical diagnosis can be shocking. Learning you have a chronic or terminal health condition can feel jarring and emotional...reactionscomments
HAE is Not Just a Physical Disease: The Mental Battle Inside My HeadMany people know of hereditary angioedema (HAE) as a disease that shows itself physically, but what they don’t see is sometimes the...reactionscomments
The Power of Your Voice: Sharing All Symptoms with All SpecialistsTime and time again, I'm reminded about the importance of telling every single one of my doctors about my health updates –...reactionscomments
Community Views: Navigating the ER as a Rare Disease WarriorLiving with a rare disease creates unique obstacles to healthcare. Specialist doctors understand rare diseases best, but sometimes you need emergency care...reactionscomments
Common Tests and Tools for Diagnosing a Rare DiseaseAn incorrect or delayed diagnosis of a rare disease is common. Because so few people have a particular rare condition, the doctors...reactionscomments
I’ve Learned Self-care. What About Self-love?Editor's Note: This article was written by Jenny Jones and originally appeared on our partner site RareDisease.net. When we experience chronic illness...reactionscomments
Why Joining Your Rare Disease Community Is ImportantEditor's Note: This article was written by Alex Gaudlap and originally appeared on our partner site RareDisease.net. When my son received his...reactionscomments
Mastering the Infusion: A Guide to Self-Administration and Port CareLiving with hereditary angioedema (HAE) means you must be ready for a swelling attack at any time. Learning to give yourself your...reactionscomments
Understanding Clinical TrialsA clinical trial is a type of research. Research is the process scientists use to discover how our bodies work or why...reactionscomments
