I survived sarcoma cancer — Virgil Abloh’s death will hopefully bring awareness to the rare disease
OPINION: TheGrio's Senior Vice President Geraldine Moriba shares her story battling the same rare cancer that took the life of Abloh at 41.
Reading the news of Virgil Abloh’s death gave me chills. According to reports, he died at age 41 after battling a rare, aggressive form of sarcoma cancer for two years. This could have been my story. When I was age 38, I was also diagnosed with a type of sarcoma cancer. I was given six months to live.
Sarcoma tumors develop in healthy people with no apparent risk factors. It is a rare cancer that can occur anywhere in your body, in bone or soft tissue. It has no known cause and no cure. There are more than 30 types of soft tissue sarcoma. They are all rare and often misdiagnosed. I know, it happened to me.
In my case, the tumor was running along the radial nerve in my right arm. It was a malignant peripheral nerve sheath tumor. In Abloh’s case, it has been reported he had cardiac angiosarcoma.
The prognosis for this disease is dismal. The average life expectancy after diagnosis is only a few months. Abloh lived for a couple of years beyond his diagnosis. He is one of the lucky ones.
I never had the honor of meeting Abloh. Now we share membership in a club no one wants to be a part of.
Guilt is a complicated emotion. My cancer fight lasted a year and a half, and now, as far as my doctors know, there are no active tumor cells in my body. For me, the mystery of why I survived, and many people do not, continues to trigger guilt. It happened again today with this news.
I survived. Abloh did not.
My lingering questions about what causes sarcoma, and why so few survive, motivated me in 2016 to produce Until 20, a documentary that followed the final year of a young man with osteosarcoma who challenges himself to do one good thing every remaining week for someone else. He turned devastating odds into a personal mission to live a good life. It is about the depth of love, not the length of it.
The fact is rare cancers are exponentially devastating because so little research is being done. Unfortunately, there’s little incentive for pharmaceutical companies to find a cure for sarcoma since they account for only 1% of all adult cancers in America. With so few cases, there’s little money to be made from research. No profit. No incentive to do research.
We wear ribbons for the big cancers, and race for the cure, but building awareness about rare cancers and pushing for research funding is also critical. With tax incentives pharmaceutical companies could be encouraged to invest here.
When you factor in race and access to affordable healthcare, the odds of survival are even lower. In addition to his spectacular fashion genius and the doors he opened for so many aspiring Black designers, the unexpected gift Abloh leaves behind is greater awareness of sarcoma cancer.
Geraldine Moriba, Senior Vice President, is a media executive, filmmaker and journalist who has worked in leadership roles at PBS, CNN, NBC, ABC and CBC. She has developed television news programs, launched news sites, produced documentaries, covered live elections, and provided standards and practices coverage. Moriba is a former John S. Knight journalism fellow and Stanford University Brown Institute research scientist who used machine learning to analyze cable news editorial decisions. She’s the co-host and executive producer of Sounds Like Hate, a podcast series funded by the Southern Poverty Law Center. Her work has earned five Emmy Awards, an Alfred I. DuPont Award, two Peabody Awards, the Princeton University Ferris Professorship of Journalism Fellowship, an Anita Hill Gender Justice Award, two RTNDA-Unity Awards, two NABJ First Place Documentary Awards, and many more. Follow her on Twitter.
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