What Is a Rare Disease?...Some have been known for hundreds of years, like cystic fibrosis and hemophilia. Others have only recently been discovered.... By Editorial Team 3 min readBookmark for later
What Is Power Posing?...symptoms of chronic, rare conditions like hemophilia, sickle cell disease, and more.... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
The Big Craple Incident: How My Rare Disease Canceled My Travel Plans...Since I have moderate hemophilia, I treat "a la carte."... By Shawn Decker4 min readBookmark for laterReactions 0 reactions Comments0 comments
Xanadu I or Don't I? A Rare Disease Roller Skating Odyssey...Having moderate hemophilia doesn't prevent me from doing most of what I want to. I could have said, "Yes!"... By Shawn Decker3 min readBookmark for laterReactions 0 reactions Comments0 comments
Common Tests and Tools for Diagnosing a Rare Disease...The lab checks it for genetic mutations that can cause inherited diseases or defects, such as hemophilia. Amniocentesis is not routinely done.... By Editorial Team 4 min readBookmark for later
Myths and Misconceptions About Rare Diseases...Cystic fibrosis, hemophilia, and Gaucher disease are examples of genetic rare diseases that may be diagnosed in children.... By Editorial Team 3 min readBookmark for later
How Do I Find a Specialist for My Rare Disease?...Finding a specialist who can guide you on your journey is key.... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Tips for Finding the Right Doctor...She simply got a new position at a different practice.... By Jessica Hanson3 min readBookmark for laterReactions 0 reactions Comments0 comments
Becoming a Do-Not-Resuscitate Patient...Disclaimer: A DNR bracelet is not legally binding in my state; only a DNR order is.... By Jenny Jones2 min readBookmark for laterReactions 0 reactions Comments0 comments
Yoga Doesn’t Cure My Autoimmune Diseases...But it's not a stand-alone replacement for medical treatment, and it's certainly not a cure.... By Jessica Hanson3 min readBookmark for laterReactions 0 reactions Comments2 comments
Facing a Terminal Illness...This type of care also offers support to your loved ones. Your doctor can give you a referral to a palliative or hospice... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 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... By Dusty Terrill3 min readBookmark for laterReactions 0 reactions Comments0 comments
Life as a Rare Disease Parent: My Motherhood Journey...I am a rare disease advocate, a research contributor, a non-profit founder, and a rare disease writer.... By Alex Gaudlap3 min readBookmark for laterReactions 0 reactions Comments0 comments
Planning a Vacation With a Rare Disease...We'd be going to a small town in a different country.... By Jessica Hanson4 min readBookmark for laterReactions 0 reactions Comments2 comments
'I Have What?!' What Happens When a New Diagnosis Does Not Make Sense?...a name for what I am experiencing.... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments0 comments
Getting a Rare Disease Diagnosis: What's in a Name?...While medical professionals can explain a lot of what to expect following a procedure or starting a new medication, there is nothing... By Erin Leibowitz3 min readBookmark for laterReactions 0 reactions Comments0 comments
Finding a Therapist...While I didn’t necessarily feel like I was learning a lot, there was a good vibe.... By Jessica Hanson3 min readBookmark for laterReactions 0 reactions Comments0 comments
Caring for a Child With a Rare Disease...Sometimes a case manager is also a helpful resource.... By Editorial Team 2 min readBookmark for later
