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... By Shawn Decker3 min readBookmark for laterReactions0reactionsComments0 comments
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... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
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... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
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... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments0 comments
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... By Editorial Team 4 min readBookmark for laterReactions0reactionsComments0 comments
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... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
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... By Editorial Team 4 min readBookmark for laterReactions0reactionsComments0 comments
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... By Editorial Team 4 min readBookmark for laterReactions0reactionsComments0 comments
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... By Jessica Hanson3 min readBookmark for laterReactions0reactionsComments0 comments
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... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
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... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
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... By Ella Balasa2 min readBookmark for laterReactions0reactionsComments0 comments
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... By Editorial Team 2 min readBookmark for laterReactions0reactionsComments0 comments
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... By Editorial Team 2 min readBookmark for laterReactions0reactionsComments0 comments
5 More Practical Tips to Thrive After a Kidney TransplantIn part one, 5 Practical Tips to Thrive After a Kidney Transplant, I discussed the pertinent things that you need to keep your kidney working at its best. The next... By Editorial Team 2 min readBookmark for laterReactions0reactionsComments0 comments
How Do I Know If I Have Adult-Onset Still’s Disease?Adult-onset Still’s disease (AOSD) is a rare inflammatory condition that affects mostly the joints. But it can affect many other areas of the body too. AOSD is an autoimmune condition... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
Gene Therapy for HemophiliaFor more than 20 years, gene therapy has been evolving as a treatment option for people with hemophilia. Hemophilia is a rare genetic disease in which blood does not clot... By Editorial Team 4 min readBookmark for laterReactions0reactionsComments0 comments
What to Know About Kidney TransplantsTreating rare kidney diseases begins with medicines and lifestyle changes. These methods aim to treat the underlying causes of the kidney disease or the health problems that arise from it... By Editorial Team 4 min readBookmark for laterReactions0reactionsComments0 comments
Questions to Ask Your Doctor When You Have Adult-Onset Still’s DiseaseLiving with adult-onset Still’s disease (AOSD) can be challenging and sometimes confusing. Even if you have been living with it for years, new questions can always come up. Staying in... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
What Are Rare Kidney Diseases?In the United States, a kidney disease is considered rare if it affects fewer than 200,000 people. There are more than 150 different types of rare kidney diseases, and they... By Editorial Team 4 min readBookmark for laterReactions0reactionsComments0 comments