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Sep. 10, 2021

TOPIC: Patients & Members, Patient Stories, Voices of Rare Cancer

Sharing Makayla’s Voice for Rare Cancer Day

Posted by Rohan Narayanan

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 was not a lot of knowledge of GIST. Although we are still years away from accumulating the information we need, we have learned that people with the same mutation as me, epigenetic SDH-C, often live a fairly normal life. However, it is common for people to struggle due to complications of the tumors themselves. In my case, all I can remember is having stomach pain, and I don’t know what it’s like to live without it. 

My story, like anyone else’s, is rare and unique and deserves to be heard. My 10+ years of dealing with this cancer has given me the opportunity to learn so much and be an advocate for others struggling with GIST and other rare diseases. My voice may be quiet as an individual but if you bring together the thousands of people who have been diagnosed with rare diseases, our voices are like lions. 

September 30 is #RareCancerDay, an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. NORD is highlighting the stories of the rare cancer community – learn more.