Pacing Yourself, Pushing Yourself: How to Manage Energy Levels With a Rare Disease...I am beginning this article on my commute train to work, starting another work week after a typical weekend for me of...reactions4comments
Treating Primary Biliary Cholangitis...Primary biliary cholangitis (PBC) is a long-term medical condition that impacts the liver. While PBC has no cure, treatments may help slow...reactionscomments
Questions to Ask Your Doctor When You Have Primary Biliary Cholangitis...Primary biliary cholangitis (PBC) is a lifelong condition. If you are facing a PBC diagnosis or have been living with PBC, you...reactionscomments
Understanding Primary Biliary Cholangitis...Primary biliary cholangitis (PBC) is a chronic condition that affects the liver. Chronic means that it lasts for life. It is also...reactionscomments
Living With Primary Biliary Cholangitis...Primary biliary cholangitis (PBC) is a lifelong condition that causes inflammation in the bile ducts in the liver. Over time, this can...reactions5comments
How is hATTR-PN Diagnosed?...Many people who have hereditary transthyretin amyloid polyneuropathy (hATTR-PN) go through a long and difficult journey before they get a correct diagnosis...reactionscomments
Understanding Hereditary Transthyretin Amyloid Polyneuropathy (hATTR-PN)...Learning that you or a loved one has a rare condition can feel overwhelming. Many people with transthyretin amyloid polyneuropathy (ATTR-PN) spend...reactionscomments
Community Health Leaders...In order to stay up to date on the latest treatments, drug discovery, clinical studies, and how to cope with rare disease every...
Signs and Symptoms of hATTR-PN...Living with unexplained health changes can feel like trying to solve a puzzle with missing pieces. Many people with hereditary transthyretin amyloidosis...reactionscomments
How Is Amyloidosis Treated?...Amyloidosis is a rare disease in which an abnormal protein called amyloid builds up in the organs. The heart, kidneys, liver, spleen...
Signs and Symptoms of Rare Kidney Diseases...Rare kidney diseases can affect people of all ages and backgrounds. There are more than 150 different types of these diseases, and...reactionscomments
One In Fifteen: My Story...I was born at 24 weeks - weighing under a pound and was only 8 inches long. My parents were told I...reactions1comment
Finding Peace in the Unknown: My Journey Through Pain, Purpose, and Empowerment...I believe in the transformative power of love, grace, and peace. My journey of self-discovery has shown me that in helping others...reactions1comment
My Son Has Familial Adenomatous Polyposis (FAP) Syndrome...My ex was not happy with our son’s height,. He felt our son wasn’t growing.I reminded him that our older son, Michael...reactions3comments
A Lifetime of Being Disbelieved...10 years ago I was diagnosed with progressive systemic sclerosis, SSc.For many years I've suffered with severe gastrointestinal issues, and for years...reactions4comments
How Persistence and Medical Partnership Impact Diagnosis...I am a complicated rare disease patient. Not only do I have two rare diseases, but I am also potentially developing a...reactions4comments
Tips for Reducing Medical Appointment Burnout...With a rare disease, it seems it doesn't take much for us to enter the world of becoming a complex rare disease...reactionscomments
What to Expect From Genetic Counseling and Testing...If you have a rare disease or one runs in your family, your doctor might suggest genetic counseling and testing. People get...
A Caregiver's Guide to Explaining a Rare Disease Diagnosis...As our family's rare disease community (VAMP2) continues to grow, I am often frustrated with the healthcare providers who are giving this...reactionscomments
