5 Changes I Would Like to See in the U.S. Healthcare System...As someone who has been to many, many doctors for multiple chronic illnesses and a rare disease, there are so many things I wish for in the American healthcare system... By Jessica Hanson3 min readBookmark for laterReactions0reactionsComments4 comments
Alex Gaudlap...Alex Gaudlap is based in New Jersey, right outside of Philadelphia. Alex is one of the many people that did not plan to be part of the rare disease community... By Editorial Team 2 min readBookmark for later
What If I Hadn't Been Born With a Rare Disease?...There's a Marvel Comics series called "What If...?" It offers mind-bending scenarios about what could have happened if one little thing was different about a character. WHAT IF...Spider-Man was bitten... By Shawn Decker3 min readBookmark for laterReactions0reactionsComments0 comments
Invisible Illness...What aspects of your rare disease are invisible to others?...Reactions0reactionsComments69 repliesCoping
Medical Mystery Turned Into a Rare Disease Warrior...Josiah J is a wild spirited two-year-old who has familial cold autoinflammatory syndrome (FCAS). When I was pregnant with Josiah I developed a lot of complications, but a mother's intuition... By MCabrera31 min readBookmark for laterReactions0reactionsComments2 comments
3 Ways I Combat Burnout...As a person living with a rare and chronic disease, I have much less energy than the average person. Even keeping up with the bare minimum of daily tasks necessary... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments0 comments
Planning a Vacation With a Rare Disease...Summer is here! Time to travel to new places, experience local cuisine, and have some fun in the sun! Okay, easier said than done for individuals with chronic illnesses. With... By Jessica Hanson4 min readBookmark for laterReactions0reactionsComments2 comments
Traveling With a Rare Disease...Tell us about your travel experiences? How do you prepare for a long or short trip? Do you have any tips to share with the community?...Reactions0reactionsComments6 repliesTravel
Rare Disease in Children...Were you diagnosed in childhood? How did having a rare disease shape you? If you are a caregiver, share about your little warrior!...Reactions0reactionsComments2 replies
West Nile Virus...Long term walking difficulty. Walk very slowly with a cane....Reactions0reactionsComments0 repliesExerciseCopingTreatment
Hypoglobulimia ...Just wondering how many others have this, mine was med induced....Reactions0reactionsComments9 repliesTips & AdviceResearch & Clinical TrialsNewly Diagnosed
Hygiene and Chronic Illness: 5 Tips for "Lazy" People...Editor's Note: This article was written by Mikayla Bianchin, a Health Leader living with cystic fibrosis. Read more of Mikalaya's articles at Cystic-Fibrosis.com. While living with a chronic illness, keeping... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
Guys, I'm so rare, it seems I'm the only one here with autoimmune cholangitis...Please tell me I'm not the only one with this diagnosis, here...Reactions0reactionsComments1 replies
Am I Too Chill About My Rare Disease?...Recently, I had lunch with my fellow RDs (Rare Diseasers). These are some of my friends who also live with hemophilia. Since we live more than 60 miles apart, we... By Shawn Decker4 min readBookmark for laterReactions0reactionsComments0 comments
Theresa Oylear...Theresa is a rare disease/chronic illness warrior located near Portland, Oregon. She was diagnosed with Complex regional pain syndrome (CRPS) in 2017 after injuring her hand and wrist. She went... By Editorial Team 1 min readBookmark for later
Michelle Fruhschien...Michelle here- aka Mamabear. My 3-year-old daughter, Hailey, was diagnosed at 8 months of age with a rare diagnosis, Jordan's syndrome, a random mutation of the gene PPP2R5D. At the... By Editorial Team 1 min readBookmark for later
Addison's Disease ...Most people have never heard of Addison's Disease or know what adrenal glands are and what they do. I have a little information about it, but not much. I was...Reactions0reactionsComments2 replies
CIDP (Chronic Inflammatory Demyelinating Polyneuritis)...I was an RN but didn't know about this disease. I would love to hear from people who have it, what kind of treatment they get, a little pathophysiology, and...Reactions0reactionsComments0 replies
Finding My Calling...I have always known I was meant to help others. It feels like an intense need to share my light and bring calm or happiness. But I can't hold someone... By Dusty Terrill4 min readBookmark for laterReactions0reactionsComments2 comments
Living Life With Rare Diseases: Giving Up vs Not Giving Up...As I continue forward in my healthcare journey as a person with multiple rare diseases, I have begun to accept that I need to streamline my life, meaning I now... By Gina Miller3 min readBookmark for laterReactions0reactionsComments5 comments
