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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments1 comments
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
What Is Caregiver Burnout?Living with a chronic condition can be exhausting. Caring for others also can be draining. People with chronic disease and their healthcare teams often experience burnout. Other caregivers, like family...Reactions0reactionsComments0 comments
What to Expect After a MAC DiagnosisBeing diagnosed with MAC lung disease is overwhelming for many people. The good news is that most infections with Mycobacterium avium complex (MAC) bacteria respond to prescription drugs (antibiotics) if...Reactions0reactionsComments0 comments
Exercising When You Have a Lung ConditionShortness of breath and fatigue are common symptoms of lung conditions. These issues can make it hard to want to exercise. They can also make it challenging to complete some...Reactions0reactionsComments0 comments
Nutrition for Lung HealthWhat you eat can play a big role in your lung health. Maintaining a healthy weight, partly through diet choices, can be especially important when you are managing lung issues...Reactions0reactionsComments0 comments
Community Members Share Their MAC Lung Disease ExperiencesNavigating a MAC lung disease diagnosis can be challenging. There can be a lot of uncertainty and many questions that arise. It helps to keep in touch with your doctor...Reactions0reactionsComments0 comments
Community Spotlight: Bleeding Disorders That Aren't HemophiliaInherited hemophilia is not the only type of bleeding disorder. Other bleeding disorders can appear similar to hemophilia but involve different abnormalities. Diagnosing a bleeding disorder requires blood tests. Blood...Reactions0reactionsComments0 comments
What Is MAC Lung Disease?There are many types of lung disease. Some lung problems are caused by genetic issues like cystic fibrosis. Environmental exposures like cigarette smoke can cause lung disease, too. And certain...Reactions0reactionsComments0 comments
Are You at Risk for MAC Lung Disease?MAC lung disease is caused by Mycobacterium avium complex (MAC) germs. MAC germs are all around. They live in soil, water, household dust, and some food products. Humans and animals...Reactions0reactionsComments0 comments
Asthma and Nontuberculous Mycobacterial (NTM) Lung DiseaseAn estimated 86,000 people in the United States live with nontuberculous mycobacterial (NTM) lung disease. And the number of people diagnosed with NTM – especially among women and older adults...Reactions0reactionsComments0 comments
Community Spotlight: Glycogen Storage DiseasesGlucose is an important sugar that bodies need for energy. The body packs small molecules of glucose into large molecules called glycogen. Glycogen is stored in the cells of the...Reactions0reactionsComments0 comments
Community Spotlight: Rare CancersRare cancers affect fewer than 40,000 people per year in the United States. These cancers make up about a quarter of all cancers and account for about a quarter of...Reactions0reactionsComments0 comments
What Is Gene Therapy?Genes are the pieces of DNA that make us who we are. They determine our eye and hair color, how tall we will be, and if we are prone to...Reactions0reactionsComments0 comments
ICD Codes: Why They Matter in Rare DiseaseThe International Statistical Classification of Diseases and Related Health Problems (ICD) is used worldwide to standardize the classification of diseases. It is used as a uniform way to collect statistics...Reactions0reactionsComments0 comments
Genetics 101Our genes are like a recipe book for our bodies. They tell our cells what to do, how to grow, and how to repair themselves. Genes play a role in...Reactions0reactionsComments0 comments