The below article was originally published on June 14th, 2018 in Miracle Flights Newsletter, The Co-Pilot, and is being republished here with permission. Rebecca is big sister to 10-year-old Amanda…
Click to read parts one and two of Joanie's story. Since 2012, when I left my job as an educator, I have tried many different modes of medical therapies. I'm…
I am a caregiver mom to my two special needs, young adult, rare disease kids. I am also a recent widow; previously, I was a caregiver wife to my very…
Before I start, I want to remind everyone that I am not your doctor or a halfway adequate replacement for your doctor. If you find that you're fainting regularly-- whether…
To read part one of Joanie's story, click here. In 2014, I developed excruciating back pain and eventually the doctors found I had two spinal cord tumors. One was on…
At age 60, I am learning to love and accept the woman I am right now. This is long overdue: I never envisioned a life walking with a white cane…
As a 26-year-old working mother, all of life seemed in place. A rewarding job, a precious baby, and a supportive husband filled the hours and made for great memories. Days…
Happy Friday everyone! This was a week with a highlight on research: we cover the state of ME/CFS information at the moment, an exciting treatment approval for people with ulcerative…
In 2017, a group called “Traveling CVS Warrior” was created on Facebook. This is a group I created that sends a stuffed animal aka a Cyclic Vomiting Syndrome (CVS) Warrior to…
This morning, I was on an elliptical before work, reflecting on the life-long journey I've been on with exercise and Ehlers-Danlos syndrome. I hated PE class as a kid. I…
Patient Worthy is proud to announce some new features to our website! Thanks to your valuable feedback, we have now enabled the personalization of your homepage to emphasize the news…
Nevaeh was born on the 3rd of September at 12:38 AM by emergency section due to the cord being wrapped round her neck, which was causing her heart rate to slow…
Happy June everybody! We hope everyone's ready to kick off their summer, whatever that may include. This week we have two stories from younger patients who are leveraging their own…
I'm Celeste, and I'm sharing my story because too many ill people go undiagnosed and too many healthy people know nothing of it. Being chronically ill is like (for lack…
My name is Jeremiah, and I have Postural Orthostatic Tachychardia (POTS). My body has been a source of significant challenges since I was very young. Asthma, unexplained rashes, passing out,…
TGIF, everybody! This week we're sharing music videos by a singer who raises awareness for aHUS, a journey of a dysautonomia patient, and a story about a man who was…
This patient story is written by PW Contributor Kim Hartgraves. I was in the military for nine and a half years, until I had to accept an honorable under medical…
Happy Friday, everybody! This week we're highlighting a celebration of rare moms, thoughts on the value of prayer in the rare community, and a PBC patient offering guidance on how…
Dear UK businesses and decision makers within them, I know it’s mental health awareness week but for my benefit could you for just a couple of minutes focus on the…
We all have those well intentioned colleagues, friends, and family members. You try to explain to them what primary biliary cholangitis (PBC) is, what’s going on in your body, and what…
When I was pregnant with my second child, I knew it would be different. We had all the essentials from having my daughter a few years earlier, and advice from…
Ever since I was little I have always loved the thought of Mother’s Day. My mom has always been a hero in my mind. I remember thinking to myself, “She…
Happy Pre-Mother's Day Everybody! This week we're spotlighting four articles from or about members of the rare community. We have a tribute to nurses from a rare mom recognizing their…
I have always had a gusto for life. Big dreams. Grand ideas. Strong and independent with a will to fight for what I want. And while I’ve had my share…
My name is Stephanie. I am Tristan's older sister and a Registered Nurse. I spend a lot of time with him as he requires nursing care around the clock. I…
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