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
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
What Makes a Rare Disease Patient Advocate?Rare disease advocates are patients that have a story to tell and are willing to share these experiences with the world. Our...reactions2comments
Yes, You Can Travel as a Dialysis PatientWhen I got the news that my kidney function had diminished to the point that I needed dialysis, my heart sank. I...reactionscomments
5 More Practical Tips to Thrive After a Kidney TransplantIn part one, 5 Practical Tips to Thrive After a Kidney Transplant, I discussed the pertinent things that you need to keep...reactionscomments
Holidays and Rare DiseasesHolidays with a rare disease can be challenging, particularly regarding energy, diet, and disability accommodations. Balancing energy and stress levels during holiday...reactions1comment
Amy’s story: Let’s play a little game● Lift up your right arm, and now lift up your left. Lower them again. ● Tip your head up. Look up...reactions5comments
My Mental Health DiscoveriesContent Note: This article describes suicide. If you or a loved one are struggling, consider reading our suicide prevention article. Through my...reactionscomments
Coping with Grief During the Holiday SeasonEditor’s Note: This article was originally shared by our sister site, H-I-V-.net, and was written by Khafre Kujichagulia Abif. I can remember...reactionscomments
