Webinar: Emergency Preparedness WorkshopLiving with a rare disease can mean that emergency room and primary care doctors are unfamiliar with your condition. This can make visits to the emergency room, urgent care center...reactions2comments
Caregiver's LoveIt takes a special person to be a caregiver. There are different types of caregivers; some are partners, some are family, and others are friends. They all have a special...reactionscomments
Preparing for End-Stage Kidney DiseaseEnd-stage kidney disease (ESKD) is when your kidneys are barely working or have stopped working. This condition is also called kidney failure. If you have kidney failure, you will need...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
Treating Rare Kidney DiseasesMany rare kidney diseases currently have no cure. However, there are treatment options that can help. There are several factors to consider when creating a treatment plan for a rare...reactionscomments
Signs and Symptoms of Rare Kidney DiseasesRare kidney diseases can affect people of all ages and backgrounds. There are more than 150 different types of these diseases, and each one has unique features. Even the same...reactionscomments
Nutrition and Exercise With Pompe DiseaseRight now, there is no cure for Pompe disease. The main treatment is enzyme replacement therapy (ERT). ERT drugs help replace the protein (enzyme) that is low or missing in...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
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
