When Illness Calls: A Tale of One Rare Disease...As a person with narcolepsy type 1, I am used to my life not looking like other people's. My average day with...reactionscomments
The Impact of Rare Disease on Siblings...A rare disease diagnosis affects the entire family. When a rare disease touches a child, parents become caregivers. Taking care of the...reactionscomments
How Is Adult-Onset Still’s Disease Treated?...In people with adult-onset Still’s disease (AOSD), the immune system does not work the way it should. Instead, their immune system proteins...reactionscomments
When We Are Eager to Undergo Medical Tests...Medical tests are not enjoyable by any means but that doesn't mean one won't feel eager to have a medical test performed...reactionscomments
Webinar: Emergency Preparedness Workshop...Living with a rare disease can mean that emergency room and primary care doctors are unfamiliar with your condition. This can make...reactions2comments
Caregiver's Love...It takes a special person to be a caregiver. There are different types of caregivers; some are partners, some are family, and...reactionscomments
Preparing for End-Stage Kidney Disease...End-stage kidney disease (ESKD) is when your kidneys are barely working or have stopped working. This condition is also called kidney failure...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 Mayhem...If you have a rare disease, you are probably aware of the struggle often involved in finding treatment for rare diseases. Even...reactionscomments
Treating Rare Kidney Diseases...Many rare kidney diseases currently have no cure. However, there are treatment options that can help. There are several factors to consider...reactionscomments
Signs and Symptoms of Rare Kidney Diseases...Rare kidney diseases can affect people of all ages and backgrounds. There are more than 150 different types of these diseases, and...reactionscomments
Nutrition and Exercise With Pompe Disease...Right now, there is no cure for Pompe disease. The main treatment is enzyme replacement therapy (ERT). ERT drugs help replace the...reactionscomments
Mental Health and Having a Rare Disease Is a Double-edged Sword...Having 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
What Type of Doctors Treat Rare Kidney Diseases?...The kidneys filter extra water and waste out of the blood and make urine. They also make hormones that help control blood...reactionscomments
Tips for Navigating Gatherings With a Rare Disease...Navigating gatherings with loved ones can be tricky enough on its own. Throw in a rare disease – and maybe a few...reactionscomments
Dialysis and Kidney Disease...Dialysis is a type of treatment for people who have kidney failure, also known as end-stage kidney disease (ESKD). Over time, people...reactionscomments
Tired of Doctors Calling Me Unusual...I'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 Disease...I 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-Stigma...Living with a rare medical condition is a multi-faceted endeavor. First, you have the medical reality, where your own acceptance is imperative...reactionscomments
