Yes, You Can Travel as a Dialysis Patient...When 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...Reactions0reactionsComments0 comments
5 More Practical Tips to Thrive After a Kidney Transplant...In 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...Reactions0reactionsComments0 comments
Resources for Veterans, LGBTQ+ People, and Other Special Groups...Coping with a chronic health condition can be challenging for you, your family, and your caregivers. You rely on your healthcare team to manage your condition. However, there are other...
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...Reactions0reactionsComments0 comments
Gene Therapy for Hemophilia...For 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...Reactions0reactionsComments0 comments
What to Know About Kidney Transplants...Treating 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...Reactions0reactionsComments0 comments
Questions to Ask Your Doctor When You Have Adult-Onset Still’s Disease...Living 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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 comments
Pompe Disease: What You Need to Know...Pompe 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
Holidays and Rare Diseases...Holidays 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...Reactions0reactionsComments1 comments
Questions to Ask Your Doctor About Living With MAC...If 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 Group...Advocacy 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
Amy’s story: Let’s play a little game...● Lift up your right arm, and now lift up your left. Lower them again. ● Tip your head up. Look up as high as you can. Move your eyes...Reactions0reactionsComments2 comments
My Mental Health Discoveries...Content 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...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 Diagnosis...Being 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 Condition...Shortness 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
Coping with Grief During the Holiday Season...Editor’s Note: This article was originally shared by our sister site, H-I-V-.net, and was written by Khafre Kujichagulia Abif. I can remember when the holidays became emotionally difficult. My father...Reactions0reactionsComments0 comments