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Archives for: September 28th, 2021

Still Rare After 50 Years: Andrea’s Rare Cancer Story

Written by Rohan Narayanan on September 24, 2021

One month after his 35th birthday, my father, Kenneth, died of leiomyosarcoma (LMS). The journey was quick. He coughed up blood and it brought him into surgery. Massachusetts General Hospital diagnosed him, and he died in another hospital closer to my hometown five months later. 

As a child, I had no capacity to understand nor grieve his death. At 35, the same age he was when he passed, I… Read More

A Message to Chondrosarcoma Patients: Shayna’s Rare Cancer Story

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

Sharing Makayla’s Voice for Rare Cancer Day

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