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
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 pressure and trigger the body to make red...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
Dialysis and Kidney DiseaseDialysis is a type of treatment for people who have kidney failure, also known as end-stage kidney disease (ESKD). Over time, people with rare kidney diseases can develop enough kidney...reactionscomments
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
Questions to Ask Your Doctor About Pompe DiseaseWhether it is you or a loved one who is diagnosed with Pompe disease, you likely have many questions about the condition. Even if you have been living with Pompe...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
How Are Rare Kidney Diseases Diagnosed?Many rare kidney diseases cause long-term damage. This damage can cause the kidneys to work less and less well over time. So, early diagnosis is key. The sooner you know...reactionscomments
What Is Adult-Onset Still’s Disease?Adult-onset Still’s disease (AOSD) is a rare type of autoinflammatory arthritis. An autoinflammatory condition occurs when the body’s immune system, which creates inflammation, does not work properly. In people with...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
Nutrition and Exercise With Adult-Onset Still’s DiseaseAdult-onset Still’s disease (AOSD) is a rare type of arthritis that can cause pain and joint damage. It is often managed with medicines that work on the immune system to...reactionscomments
Pompe Disease and GeneticsPompe disease is a genetic condition. People with Pompe disease have changes in specific genes that impact how they break down sugar. These gene changes are called gene, or genetic...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
What Is Power Posing?Striking a “power pose” means taking up a lot of space with your body – standing upright with great posture, legs wide, hands on hips, chin raised to the sky...reactionscomments
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 was young, married, and fairly active with recreational...reactionscomments
