Zebras Can’t Be Tamed: Coexisting With a Rare DiseaseZebras are part of the equine family, but they have never been truly domesticated. While they are kept in zoos, wild animal parks, and safaris, they have never let themselves... By Natalie Abbott2 min readBookmark for laterReactions 0 reactions Comments0 comments
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 resulted from a nosebleed or some type of... By Shawn Decker4 min readBookmark for laterReactions 0 reactions Comments0 comments
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 asking for help when I’m sick. It’s ironic... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 from Social Security that might explain what to... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments3 comments
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 connect with others with our same rare disease... By Jenny Jones4 min readBookmark for laterReactions 0 reactions Comments0 comments
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 day at the spa could wash away my... By Jessica Hanson2 min readBookmark for laterReactions 0 reactions Comments0 comments
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 gift and regale you with all the knowledge... By Shawn Decker2 min readBookmark for laterReactions 0 reactions Comments0 comments
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 narcolepsy is slow, with at least 2 scheduled... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
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. This is likely most understandable amongst the rare... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 of what that means depends on what you... By Shawn Decker3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 once we find a treatment that works for... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
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, people think you are fine. Let me just... By Frank Rivera3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 rare disease. New here? We invite you to... By Editorial Team 1 min readBookmark for laterReactions 0 reactions Comments0 comments
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 extra chronic conditions – and I find myself... By Jessica Hanson3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 numbers on tests for everything. If your numbers... By Habberdasher3 min readBookmark for laterReactions 0 reactions Comments3 comments
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 disease I inherited from my mother, who inherited... By Jenny Jones4 min readBookmark for laterReactions 0 reactions Comments0 comments
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 in reaching your health goals. That journey alone... By Shawn Decker3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 side effects too. That is why medical experts... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 is something I like to do every year... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
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. This can make living with a rare kidney... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments