How I Learned to Advocate for My Rare Disease CareI was diagnosed with my first rare disease, familial adenomatous polyposis (FAP), around the age of 8. FAP is a rare genetic...reactionscomments
More Than Just a Diagnosis: The Daily Impact of Rare DiseaseI wrote about this topic 10 years ago, and while I forgot I had written about it, it's something I've been talking...reactions3comments
Community Views: The Hardest Symptoms to ManageThere are many challenges to living with a rare disease. The challenges may be physical, mental, and emotional. Having a rare disease...reactionscomments
Don't Put Things Off With Rare DiseaseDon't get me wrong—I can sometimes be the queen of procrastination. I have my "lazy" moments. But I want people to understand...reactions1comment
Community Views: What Makes Us UniqueLiving with a rare disease can sometimes feel all-consuming. It can take up so much of your time and mental bandwidth. But...reactionscomments
Finding Resilience and Purpose After a Rare Disease DiagnosisMy life changed dramatically in my early twenties when I experienced the onset of a rare disease called narcolepsy. Everything shifted, seemingly...reactionscomments
Journey to Chronic Rare Disease TreatmentLiving with a rare disease is difficult. Accessing treatment can be hard for many. Many rare disease drugs are expensive. Some are...reactionscomments
NOW CLOSED: Finding Comfort in Rare: Awareness Month GiveawayThe Finding Comfort In Rare Giveaway is now closed. Thank you for your interest! February is Rare Disease Awareness Month, a crucial...reactions1comment
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 –...reactions2comments
Rare Disease Advocacy Is a Constant, Never-ending OpportunityRecently, I was reminded, in the most unexpected way, that advocacy doesn't take a break even when it's the furthest thing from...reactionscomments
Pacing Yourself, Pushing Yourself: How to Manage Energy Levels With a Rare DiseaseI am beginning this article on my commute train to work, starting another work week after a typical weekend for me of...reactions4comments
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...reactions1comment
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
