Growing up, Will Kleemeier learned all about polycystic kidney disease (PKD). He had several family members with PKD, so he knew that there was a chance that he too…
Before you continue, make sure you've read Part 1 of our interview, where we discussed the Lord family's story and experience with rare disease, and the development of MobiMedQR. This tool, which…
Jack Johnson was diagnosed with Fabry disease when he was just seven years old. He likes to compare living with the rare disease to long COVID, but unlike long COVID,…
According to a story from the Glasgow Times, David Steed of Paisley, UK, was diagnosed with adrenoleukodystrophy when he was 18 years old. At the time, he didn't have any…
If you haven't already, don't forget to go and read Part 1 of our interview. In Part 1, David Ogman and I discuss his son Jordan's TECPR2 diagnosis, the diagnostic journey,…
When asked his most important piece of advice for families within the rare disease community, Jeffrey Lord said: Do what you can control and move on from there. Every day,…
Imagine feeling like you have a sweat bee stuck in your eye socket that randomly stings you. The sting hurts for seconds. My left eye is red and tearing. My…
In his early stages of life, Austin (A.J.) Rose was diagnosed with an ultra-rare disease called pontocerebellar hypoplasia type 6 (PCH6). Now, at three years old, A.J. is a…
There seems to be no limits when it comes to what a parent will do for their child. And when it came down to it, David and Stacey Ogman knew…
According to a story from Yahoo! News, a mother that is well attuned to her children can often have a special intuition when something is wrong. Thirteen year old Sheldon…
Seven-year-old Rydder Ames of Hamilton, Ohio began having troubling symptoms five months ago. His mother, Krista Steven took him to the ER after a week-long headache followed by a…
At 20 years old, Grace Hinchman was - for all intents and purposes - a happy and healthy young adult. Grace was studying Business at Loyola University Chicago and playing…
Jim Kelly and his wife Maria still remember the day they received a call from the hospital telling them that according to test results, their daughter Adriana, now age…
Hi, my name is Becky. I am age 38 from the UK and am a proud wife to my wonderful husband Carl and mother to my three beautiful children:…
It has been four years since Amaria Granger, now age 14, was diagnosed with a rare disease called Niemann-Pick disease type C (NPC). Since being diagnosed with NPC, Amaria…
Before you read on, please make sure to check out Part 1 of our interview, where we discuss what a desmoid tumor is, and share Amy's story of living with a desmoid…
Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is a…
It is incredibly important to raise awareness of rare and underserved conditions; this increased awareness not only helps to spread the stories of those affected, but to garner support, connect…
Seven years ago, Dennis Smith started having extreme back pain. Dennis, 48 at the time, was extremely active. He loved playing football, going to the gym, and riding his bike.…
Ryan Smith has always been tenacious in pursuing his goals. One of his most important goals? Supporting his family and his community. As a lieutenant with the Stillwater Fire Department,…
According to a story from Yahoo News UK, Dr. Paula Hunt had a CT scan earlier this year with alarming results. The scan appeared to show a large tumor in…
When Brett Devloo was fifteen years old, he lost his sight. It happened, he feels, suddenly; one minute, Brett was reading and writing notes in his history class and…
According to a story from klfy.com, 15 year old Mia Braseaux may seem like a normal teenager; she plays sports, goes to school, and socializes with friends. However, Mia was…
Written by Christina Fleagle There are millions of people around the world living with a rare disease, and for many, you may not know it by looking at them. But…
For five years, 20-year-old Christopher Backlund lived with his grandfather, with whom he had a strong and meaningful bond. Unfortunately, Christopher's grandfather, Mitchell, passed away in Februay 2021. As Christopher…
© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
