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Archives for: September 30th, 2021

Timing and Access: Katherine’s Rare Cancer Story

Written by Rohan Narayanan on September 30, 2021

I was a healthy 27-year-old with no underlying risk factors when I was diagnosed with appendix cancer. 

One evening, I started cramping in my abdomen. I thought nothing of it until the intensity increased and I could barely sit upright or walk. I called my primary care provider and she recommended I go to the emergency room,… Read More

Rare Cancer Day 2021: Bryce’s Clear Cell Sarcoma Story

Written by Maia Craig on September 30, 2021

Bryce was able to get diagnosed with clear cell sarcoma (CCS) quickly. He tries not to think about it but finds it virtually impossible because he knows that there is no cure. Originally, his primary care physician thought the mass could be a desmoid tumor but once the CT scan… Read More

Rare Cancer Day 2021 Brings Together Rare Disease Community and Advocates

Written by Rohan Narayanan on September 29, 2021

Washington, DC, September 29, 2021 Tomorrow, the rare disease community will celebrate the third annual Rare Cancer Day. Spearheaded by the National Organization for Rare Disorders (NORD®) Rare Cancer Coalition™, Rare Cancer Day is observed on September 30 to highlight the challenges patients face and to unify individuals… Read More

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