When Jessica Kalnas was growing up, her mother Judy thought her daughter was just clumsy. The youngest of six kids, Jessica was always falling over: off of her bike,…
In 2016, 6-year-old Alec Ahmad loved club soccer, playing games with his two brothers, and running around with his friends at recess. He was full of energy. But every once…
My name is Mika Jayne Covington. I’m 29 years old and I live with an ultra-rare disease called cystinosis. I am also a transgender woman and my pronouns are she,…
During the beginning stages of COVID-19, there was a common refrain: "It's no big deal. It's just like the flu." But just a few months into this global pandemic, we…
When Elsa Cavazos was in high school, she experienced some physical "abnormalities" that she wasn't quite sure how to deal with. While peers worried about the occasional zit on…
"I thought it was a hernia." When George Benson experienced lower abdominal pain in 2009, at age 51, he wasn't concerned. He was a truck driver, artist, and family…
Five years ago, Leah Gaitan-Diaz's life changed when she was diagnosed with myasthenia gravis. But with this condition comes a lack of understanding or confusion over what it entails. In…
Kelly and Rory McElligott, of Highton, Victoria, Australia, have 3 beautiful children: Maggie, Billy, and Alice. But the family was shocked when two of their children, Maggie and Billy,…
As reported in Multiple Sclerosis News Today, Jessie Ace tells the story of receiving her diagnosis with multiple sclerosis at 22. She wrote, "I hate needles." She ranks being told…
As reported in Liverpool Echo; Faye was just 12 she began to have difficulty walking. She didn't realize it was her first encounter with the devastating disease that she had…
The UFC has some tough fighters in it. But 35-year-old Joe Ellenberger never thought that his most difficult opponent would be within himself. That is, his paroxysmal nocturnal hemoglobinuria (PNH),…
In 2003, Suzan Jackson was diagnosed with myalgic encephalitis, or chronic fatigue syndrome (ME/CFS). Shortly after, she was faced with the complexity of having a chronic illness. Should she tell…
Imagine that you're a parent of five beautiful daughters. One night, you put them all to bed and all seemed well: playful, happy, excitable. Then, the next morning, you wake…
A few years ago, Kyan Harris started experiencing some unwelcome health issues. At just nine years old, the boy wanted to play rugby with his friends. But instead, he was…
To read part 1 click here Kristie’s medical mystery was now solved. What was the next step? After speaking with her genetic counselor about her results, Kristie was referred to…
Kristie DeMarco was an extreme athlete- constantly training for triathlons, ironman races, ice swimming, and open water swimming. She loved to compete in various feats of strength and endurance. Overall,…
When Shellye Horowitz was younger, she had a clear link to the rare disease community: her father. He had hemophilia and, much like many patients, relied on blood clotting factor…
According to UIC Today, Jessica Lechuga became immersed within the rare disease community when she was still a teenager. That's because, at age 17, Jessica gave birth to her daughter…
Maddie Nordhoy has a smile that can light up the room. She constantly brings joy to those around her, especially her family. In fact, she is even the inspiration for…
Because I will be looking for a job from a rare but certainly not unique place of being, I decided to reach out to a mentor who lives with the…
10-year-old Joey Koslowski doesn't let the small...err, the big stuff get him down. According to MyCentralJersey, the boy is "the youngest child to have the largest mass in the world" caused…
I recently had the pleasure of being interviewed by Sunshine Mugrabi about how I transformed my life over the past 20 years in the face of immense pain and suffering…
I have been writing for this website for a little over 2 years. Neatly collecting, reading, and reporting on stories of people with rare conditions and disabilities. Little did I…
Sarah experienced her first symptoms at age eight. She suffered frequent and long migraines, despite being so young. Doctors were concerned she may have meningitis but never got to the…
“I have cried a lot more in the last ten years of my life than ever before.” A parental odyssey of rare disease, in two of their three children, and…
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