Visit any pediatric ward in a hospital or medical center and you will see many pieces of medical equipment, but visit the OT and PT departments and you are in…
Happy start-of-summer everyone! We're kicking off the summer with a wrap up on rare disease news this week. We have an article about a systemic mastocytosis study, and a clinical…
Happy Father's Day weekend! While Father's Day can be complicated in a rare family, rare parents deserve a round of applause. This week we have a Father's Day tribute from…
I've known some wonderful fathers throughout my life. My own father was a gem. My siblings agree. However, it was not until I became immersed in the rare disease world…
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…
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…
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…
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…
To read part one of this story on cystinosis, click here. Briana and Ashley are two adult women from opposite regions in the United States. Briana lives close to her…
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…
She wears a lacy white dress with a long, white veil. Her beautifully shaped eyebrows arc over long-lashed eyes. Her smile, illuminated by bright red lipstick, speaks of the happiness…
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…
When others learn that you are the parent of a child with a rare disease, they most likely correctly assume that doctor appointments and hospitals might be involved. Yet few…
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…
Whenever a rare disease family is in crisis, which happens all too frequently, the request for prayers goes out to others, knowing that the response will bring about comfort. Rare…
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…
A popular book by Dr. Seuss that is often given to graduates is Oh the Places You'll Go. Now, suppose Dr. Seuss had entered the rare disease world. Perhaps he…
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…
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