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...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 connect with others with our same rare disease...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 day at the spa could wash away my...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 gift and regale you with all the knowledge...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 narcolepsy is slow, with at least 2 scheduled...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. This is likely most understandable amongst the rare...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 of what that means depends on what you...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 once we find a treatment that works for...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, people think you are fine. Let me just...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 rare disease. New here? We invite you to...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 extra chronic conditions – and I find myself...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 numbers on tests for everything. If your numbers...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 disease I inherited from my mother, who inherited...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 in reaching your health goals. That journey alone...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 side effects too. That is why medical experts...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 is something I like to do every year...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. This can make living with a rare kidney...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 sound of your alarm clock. With sleepy and...reactionscomments
Finding Friendship in the Rare Disease CommunityWhen I was first diagnosed with a rare disease, I struggled to find a sense of community. Like many others, I had never heard of my disease before, let alone...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 goal is to share the story of living...reactions2comments
