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
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...reactionscomments
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...reactionscomments
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...reactionscomments
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...reactionscomments
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...reactionscomments
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...reactionscomments
Pompe Disease: What You Need to KnowPompe disease is a rare genetic condition that affects the muscles that connect to your bones and heart. It is also called glycogen storage disease II, acid-maltase deficiency, or acid...reactionscomments
Holidays and Rare DiseasesHolidays with a rare disease can be challenging, particularly regarding energy, diet, and disability accommodations. Balancing energy and stress levels during holiday events is a common challenge. Many families prepare...reactions1comment
Questions to Ask Your Doctor About Living With MACIf you have been diagnosed with MAC lung disease, you might have many questions that need answers. A lot of new information may be thrown at you during your doctor’s...reactionscomments
How to Start Your Own Advocacy GroupAdvocacy groups are dedicated to a specific cause. They are made up of motivated members who come up with plans to make changes at the local, state, or even national...reactions1comment
What Is the Difference Between Still’s Disease, Juvenile Idiopathic Arthritis, and Rheumatoid Arthritis?Adult-onset Still’s disease (AOSD), systemic juvenile idiopathic arthritis (SJIA), and rheumatoid arthritis (RA) are all forms of arthritis that share many similar features. It can be hard to tell them...reactionscomments
What If I Am Resistant to Antibiotics for MAC?As many as 80 percent of typical MAC lung disease cases can be cured with treatment. However, in some cases, MAC germs develop a resistance to antibiotic drugs. When this...reactionscomments
My Mental Health DiscoveriesContent Note: This article describes suicide. If you or a loved one are struggling, consider reading our suicide prevention article. Through my life with a rare disease, I've learned if...reactionscomments