Living With Primary Biliary CholangitisPrimary biliary cholangitis (PBC) is a lifelong condition that causes inflammation in the bile ducts in the liver. Over time, this can...reactions5comments
One In Fifteen: My StoryI was born at 24 weeks - weighing under a pound and was only 8 inches long. My parents were told I...reactions1comment
Finding Peace in the Unknown: My Journey Through Pain, Purpose, and EmpowermentI believe in the transformative power of love, grace, and peace. My journey of self-discovery has shown me that in helping others...reactions10comments
A Lifetime of Being Disbelieved10 years ago I was diagnosed with progressive systemic sclerosis, SSc.For many years I've suffered with severe gastrointestinal issues, and for years...reactions4comments
My Son Has Familial Adenomatous Polyposis (FAP) SyndromeMy ex was not happy with our son’s height,. He felt our son wasn’t growing.I reminded him that our older son, Michael...reactions3comments
How Persistence and Medical Partnership Impact DiagnosisI am a complicated rare disease patient. Not only do I have two rare diseases, but I am also potentially developing a...reactions4comments
Tips for Reducing Medical Appointment BurnoutWith a rare disease, it seems it doesn't take much for us to enter the world of becoming a complex rare disease...reactionscomments
A Caregiver's Guide to Explaining a Rare Disease DiagnosisAs our family's rare disease community (VAMP2) continues to grow, I am often frustrated with the healthcare providers who are giving this...reactionscomments
Patient Advocacy: Tips for Communicating with Your DoctorI once told someone about their healthcare, "You have to be the squeaky wheel." Later, a provider warned that being a "squeaky...reactionscomments
Managing Overwhelm: Giving Ourselves Permission to Take a MomentReacting versus responding. There's a difference between them that can be ignored or forgotten. Reacting is that gut punch reflex that tells...reactions2comments
Misconceptions About My Rare DiseaseIt's hard to know exactly what someone else is going through, especially if the other person has a rare disease that most...reactions2comments
Inclusivity and Rare Diseases: 6 Things for Friends and Family to ConsiderSocial situations can be very difficult to navigate with a rare disease or chronic illness. From navigating logistics to friends just not...reactions1comment
5 Tips for Practicing Self-Care With a Rare DiseaseAs a person continuously navigating life with multiple chronic illnesses, self-care is an interesting concept for me. How I wish that a...reactionscomments
Tips for Navigating Gatherings With a Rare DiseaseNavigating gatherings with loved ones can be tricky enough on its own. Throw in a rare disease – and maybe a few...reactionscomments
6 Ways to Navigate Advocacy BurnoutAdvocacy burnout is real. Some days, I'm just so tired of talking about my autoimmune conditions, navigating popular platforms, and battling uneducated...reactionscomments
How to Advocate for Yourself in Social Situations With a Rare DiseaseLearning how to advocate for yourself can be challenging. Sticking up for yourself in social situations is a journey. Here are a...reactions4comments
The Lingering Threat of Self-StigmaLiving with a rare medical condition is a multi-faceted endeavor. First, you have the medical reality, where your own acceptance is imperative...reactionscomments
Getting Beyond the BS (Beyond Severe)Disclosing a medical condition is tricky territory because we always have to be prepared for the worst possible reaction. Sadly, the scale...reactionscomments
My Rare Disease Journey With HemophiliaGreetings! My name is Shawn, and I'm happy to be a contributing writer for RareDisease.net. Maybe you are also living with a...reactionscomments
From Reactive to Proactive: Self-Administered TreatmentThere's been a big change this year in how I approach my rare disease, hemophilia A. I'm treating myself at home once...reactions5comments
