My Multidisciplinary Care Team: Why I Love My Hemophilia Treatment CenterI used to hate any type of doctor's appointment. Having been born with hemophilia, many of my earliest trips to the hospital...reactionscomments
Asking for Help and Applying for DisabilityEditor's Note: This article was written by Halimat Olaniyan and originally appeared on our partner site Sickle-Cell.com. I’m not very good at...reactionscomments
What to Expect During a Disability Hearing (In America)My phone buzzed angrily. It was 20 minutes after the hour, and I’d been scrambling about frantically. I was searching for documents...reactions3comments
Grieving Loss in the Rare Disease CommunityRare disease communities provide a unique and much-needed benefit to their members. For many of us, it's through these communities that we...reactionscomments
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
Surprise! It's Rare Disease Day!It's that special day of the year again. You know the one. The day when all of your friends bestow many a...reactionscomments
When Illness Calls: A Tale of One Rare DiseaseAs a person with narcolepsy type 1, I am used to my life not looking like other people's. My average day with...reactionscomments
When We Are Eager to Undergo Medical TestsMedical tests are not enjoyable by any means but that doesn't mean one won't feel eager to have a medical test performed...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
Coping With Specialty Medication MayhemIf you have a rare disease, you are probably aware of the struggle often involved in finding treatment for rare diseases. Even...reactionscomments
Mental Health and Having a Rare Disease Is a Double-edged SwordHaving a mental illness is a double-edged sword. If you say too much, you're a complainer. But if you don't say anything...reactionscomments
Thank You for Taking Our Survey!We appreciate you taking the time to answer all of our questions. Your responses will help us better understand life with 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
Tired of Doctors Calling Me UnusualI've learned a lot about the medical profession over the years and here in the west, they are trained to look at...reactions6comments
Learning Self-Advocacy With Rare DiseaseI was diagnosed with my first rare disease, familial adenomatous polyposis (FAP), around the age of 8. FAP is a rare genetic...reactionscomments
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
Finding a Support Person for Doctor AppointmentsPeople with chronic health conditions often face complex treatment plans and multiple doctor visits. Brain fog, fatigue, and problems concentrating are frequent...reactionscomments
New Year… Same Old Rare DiseaseThe holidays have finally passed. Now it is time to start preparing for the upcoming new year. Setting goals for personal improvement...reactionscomments
Living With a Rare Kidney DiseaseMost rare kidney diseases last a long time. There is no cure, and they often do not go away on their own...reactionscomments
How to Deal With Tough Mornings and Chronic PainEditor’s Note: This article originally was written by Annelyse Andal and shared by our partner site Psoriatic-Arthritis.com. You wake up to the...reactionscomments
