Written by Rohan Narayanan on September 17, 2021
Shayna had advanced metastatic chondrosarcoma, and her disease progression defied many expert opinions and expectations. In 2015, Shayna was misdiagnosed with scoliosis, and nine months elapsed before she was accurately diagnosed. She was prescribed physical therapy and exercises, which were ineffective in reducing her pain. Early detection is needed in diagnosing chondrosarcoma, and we found a lack of information available about the… Read More
Written by Rohan Narayanan on September 10, 2021
At the age of 14, I was diagnosed with a rare form of GI tract cancer called gastrointestinal stromal tumors (GIST).
Living with a rare disease is incredibly complicated, and you must learn how to be your own best advocate. Someone else may have the same disease, but everyone’s experience is going to be drastically different.
Initially, there… Read More
Written by Rohan Narayanan on September 3, 2021
I have been a healthy person my whole life. I never drank alcohol or smoked, and I had a good diet. In 2004, I began to have some questionable numbers on blood work, but my primary doctor could never really tell what was going on. My knees shook when I was referred to a hematologist and oncologist in 2010. I was given a diagnosis of Monoclonal gammopathy of undetermined significance (MGUS). I was… Read More
Written by Rohan Narayanan on August 27, 2021
In 2001, I was diagnosed with ocular melanoma. What makes ocular melanoma rare is that only 2,500 people are diagnosed with it each year. Following my diagnosis in October of 2001, I went through numerous tests at Sylvester Cancer Center. In November, I was admitted into the hospital where they implanted a metal plate into my left eye with 20 seeds of radiation, which was removed after a week. Read More
Written by Jennifer Huron on May 7, 2018
2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary. For the past 35 years, NORD has taken pride in being the rare disease community’s biggest advocate. Our policy, research and other efforts have played a significant role over the years, advocating for… Read More
