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
Questions to Ask Your Doctor About Pompe Disease...Whether it is you or a loved one who is diagnosed with Pompe disease, you likely have many questions about the condition...reactionscomments
Finding a Support Person for Doctor Appointments...People with chronic health conditions often face complex treatment plans and multiple doctor visits. Brain fog, fatigue, and problems concentrating are frequent...reactionscomments
New Year… Same Old Rare Disease...The 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 Disease...Most 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 Pain...Editor’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
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...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...reactionscomments
Finding Friendship in the Rare Disease Community...When I was first diagnosed with a rare disease, I struggled to find a sense of community. Like many others, I had...reactionscomments
Nutrition and Exercise With Adult-Onset Still’s Disease...Adult-onset Still’s disease (AOSD) is a rare type of arthritis that can cause pain and joint damage. It is often managed with...reactionscomments
