The Power of the Words We Tell Ourselves...I didn't fully realize how much my physical health impacted my mental health until recently. Sure, I know I've struggled with depression...reactions5comments
Community Views: The Biggest Misconception About My Rare Disease...Having a rare disease poses problems many people can not imagine. It can be discouraging to share your experiences when others do...reactions4comments
Rare Disease and AI: How Are You Using It for Your Health?...Something has shifted in the last couple of years. A late-night symptom search now sometimes starts with an AI summary before it...reactionscomments
Job-Seeking as a Caregiver for a Child With a Rare Disease...Finding a job with a supportive and understanding employer can be an ongoing challenge for those of us raising a child with...reactionscomments
Diet and Exercise Tips for Your AOSD Treatment Plan...Adult-onset Still’s disease (AOSD) is a rare type of arthritis that causes joint pain, swelling, and systemic inflammation. Healthcare providers typically treat...reactionscomments
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...reactionscomments
How to Care for Someone With Congenital Adrenal Hyperplasia...Caring for someone with congenital adrenal hyperplasia (CAH) is difficult. A CAH diagnosis can feel overwhelming since it is a lifelong genetic...reactionscomments
Living With Congenital Adrenal Hyperplasia...Living with a genetic condition like congenital adrenal hyperplasia (CAH) can pose unique challenges. But CAH does not have to define a...reactionscomments
Understanding Congenital Adrenal Hyperplasia...Congenital adrenal hyperplasia (CAH) is a group of rare genetic disorders that affect the adrenal glands. The adrenal glands are 2 walnut-sized...reactionscomments
Transitioning to Adult Care With Congenital Adrenal Hyperplasia...Congenital adrenal hyperplasia (CAH) is a lifelong condition that affects the adrenal glands, causing hormonal imbalances. For those with CAH, moving from...reactionscomments
Living with DMD: A Caregiver's Guide to Daily Life...Living with Duchenne muscular dystrophy (DMD) can bring many challenges each day. As a caregiver, you play a vital role in assisting...reactionscomments
Understanding Duchenne Muscular Dystrophy...Duchenne muscular dystrophy (DMD) is a rare genetic condition that causes muscle weakness and degeneration that gets worse over time. It is...reactionscomments
Diagnosing ANCA-Associated Vasculitis...Getting a diagnosis of ANCA-associated vasculitis can take time. The early symptoms often look like other, more common illnesses, so doctors usually...reactionscomments
Working Remotely as a Caregiver...Work is a place where you can meet people, make connections, and socialize. But in this new era of working from home...reactionscomments
Living with a Syndrome Without a Name (SWAN)...When your doctor suspects you have an illness, they may give you one or more medical tests to help them make a...reactionscomments
Treatment for ANCA-Associated Vasculitis...Several medicines are used to treat ANCA-associated vasculitis. Treatment usually has 2 goals: first, to bring the disease under control, and then...reactionscomments
Demystifying Primary Immunodeficiency Treatment...Primary immunodeficiency (PI) is a group of more than 400 chronic disorders, including many rare diseases, in which part of the body's...reactionscomments
Navigating the Chronic Illness Conversation: 4 Tips for Talking With Loved Ones...It can be so hard for people outside of the rare disease community to truly understand what we go through—ongoing symptoms, fatigue...reactions6comments
Community Views: We Are Rare, But Not Alone...Rare diseases can change your life with the everyday challenges it brings. It is hard enough to live with the constant stress...reactions6comments
