Treating Primary Biliary CholangitisPrimary biliary cholangitis (PBC) is a long-term medical condition that impacts the liver. While PBC has no cure, treatments may help slow the disease. This may prevent complications or serious...Reactions0reactionsComments0 comments
Getting Emotions Out: Why It Matters and How to Do ItEmotion suppression is something I frequently witness, and at times, I am guilty of doing it myself. I know firsthand and am reminded by my own therapists that when we...Reactions0reactionsComments0 comments
Paving the Way for ChangeThe journey of a mother like me (with a child diagnosed with a rare disease) comes with challenges most cannot relate to, and joys no one understands unless they live...Reactions0reactionsComments0 comments
Rare Diseases and Comorbidities: Which One Is Causing My Symptoms?!Living with a rare disease can come with a variety of comorbidities. It is difficult to know what to expect in terms of comorbidities for a person with a rare...Reactions0reactionsComments0 comments
Rare Versus Under-diagnosed DiseasesI have 3 autoimmune conditions: celiac disease, Graves’ disease, and thyroid eye disease. One of these is categorized as a rare disease, and one is statistically under-diagnosed. Can you guess...Reactions0reactionsComments0 comments
Life as a Rare Disease Parent: My Motherhood JourneyMy motherhood journey has come with many unique challenges that most other mothers cannot relate to. It’s been a deep journey that often surprises me and allows me to find...Reactions0reactionsComments0 comments
Cast Your Votes! What Do You Want to See on RareDisease.net?RareDisease.net is an online community where you can read articles by Health Leaders, connect with others in forums, discover others' stories and share you own, and much more! Our goal...Reactions0reactionsComments0 comments
Complications of Primary Biliary Cholangitis: What to KnowPrimary biliary cholangitis (PBC) is a chronic condition that impacts the bile ducts in the liver. Although PBC primarily affects the liver, it can cause complications throughout the body. Many...Reactions0reactionsComments0 comments
10 Things I Wish People Understood About Rare DiseasesBeing a caregiver to someone with a rare disease can be a complex journey. It not only alters the life of the person affected, but it also impacts the lives...Reactions0reactionsComments0 comments
Rare Disease InternationalAs a person living with a rare disease, it can be difficult to find other people who also suffer from the same condition. Not knowing people who can relate to...Reactions0reactionsComments0 comments
'I Have What?!' What Happens When a New Diagnosis Does Not Make Sense?As a complex rare disease patient, I'm used to receiving new diagnoses and even reaching the point of desperately wanting a diagnosis just so I can have a name for...Reactions0reactionsComments0 comments
Medicaid Needs to Do Better for Rare Patients and FamiliesI recently took my 3 children to their pediatrician for the last time before our new insurance kicked in at the beginning of the year. Unfortunately, because of circumstances with...Reactions0reactionsComments0 comments
How I Travel With a Chronic Illness"Still round the corner, there may wait, a new road or a secret gate." – J.R.R. Tolkien Living in a body with a chronic illness is a challenge. My spirit...Reactions0reactionsComments0 comments
Bowled Over Again (in a Good Way!): Being Proactive With My Health GoalsMy arthritic left ankle is the thing that affects me the most where my bleeding disorder, hemophilia A, is concerned. Slight and not-so-slight bleeding into that joint over nearly 5...Reactions0reactionsComments0 comments
5 Rare Life Challenges: A Caregiver PerspectiveAs a rare mom, I do my best to hold my head high and remain positive. But the reality is, it's extremely hard. The general public is not well-educated on...Reactions0reactionsComments0 comments
How to Promote Legislative Advocacy for Rare DiseasesCan you imagine living with a condition so rare that it often feels like you are fighting a battle alone? The lack of resources, treatment options, and support can leave...Reactions0reactionsComments0 comments
Role Reversal and the Patient-Caregiver RelationshipI have been a rare disease patient since my first rare disease diagnosis of familial adenomatous polyposis at age 8. My mother (who has the same rare disease as me)...Reactions0reactionsComments0 comments
How to Care for Someone With Congenital Adrenal HyperplasiaCaring for someone with congenital adrenal hyperplasia (CAH) is difficult. A CAH diagnosis can feel overwhelming since it is a lifelong genetic condition without a cure. But with the right...Reactions0reactionsComments0 comments
Founding a Rare Disease Non-profit: The Importance of Advocate Self-careAs an advocate, caregiver, and mom, I am guilty of running on autopilot and failing to acknowledge when my body and mind are extremely tired. Because what choice do I...Reactions0reactionsComments0 comments
Voices in the Rare Disease Community: What's Your Story?Every day, we take in stories from the world around us. We consume them on social media. We read about them in books. We listen to them on podcasts. We...Reactions0reactionsComments0 comments
