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…
At just nineteen, Beth often didn’t feel well and regularly had a sickly pallor. When she went to a doctor, the doctor dismissed her and told her she just needed…
Talking about mental illness is never easy but I wanted to share my experience of it with you. In my case, it came as part of my struggle with Benign…
Adapting to a long- term health condition, is not an easy road to be on. There are many phases we go through during our journey from denial to acceptance. It…
As I listened to her story I kept thinking, “You can’t make this stuff up.” Or at least no one would want to anyway. The first time I met Adeola…
In 2012 Tessa noticed a gap between her front teeth. She was a little confused. She had had braces when she was younger and her teeth hadn’t had any gaps…
At age twenty one, Lisa was about to graduate college and had a promising future career in front of her. All that was left was graduation itself. The week before…
Heidi Jo Price, beautiful and brave, has jumped out of airplanes with a pack on her back as a member of the 173 Airborne Brigade Combat Team. What brought this…
Veronika was diagnosed with gastroparesis as a young girl. The cause was unknown. Her symptoms were demoralizing. Veronika found ways to stay positive and combat her illness. Read more below,…
En esta cuenta, desde Philly.com, el Dr. Thomas Klein, alergólogo e inmunólogo, describe su problema. Un misterio se había encontrado en su camino que no se creía capaz de resolver.…
Meet an incredible advocate for Huntington’s disease. Chasity Boatman grew up witnessing the tragic effects of this degenerative and fatal disease first hand and has now become a dedicated and…
Janelle is a 21 year old student at the University of Nebraska at Kearney. She has a great sense of humor, has shown horses for years and someday she wants…
In this account, from Philly.com, Dr. Thomas Klein, allergist and immunologist, describes his problem. A mystery had come across his path that he didn't think he could solve. He was seeing…
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