Many thanks to Chansen Savakinus of Coral Springs, Florida for his help in spreading the word about Rare Disease Day, celebrated on February 28th each year. The day brings needed attention to diseases that are under-researched and often overlooked by health policy decision makers and the medical community. By publicizing rare disease patients’ experiences, Rare Disease Day is trying to improve access to diagnosis, treatment and services for all those who are afflicted with a rare disease, like fibrolamellar carcinoma (FLC).
Chansen, who was diagnosed with FLC in May 2021, produced the video below to help build awareness of FLC and other rare diseases. While a diagnosis of FLC is extremely rare, Chansen’s cancer fight has been extraordinary since it has included two distinct types of cancer – FLC and acute lymphocytic leukemia (ALL). At age six, Chansen was diagnosed with ALL and underwent treatment for that blood cancer for 3 ½ years. He then suffered a relapse at age 11 and received another 2 ½ years of leukemia treatment. Now, at age 21, he is in active treatment for FLC. Hopefully, advocacy efforts like Chansen’s will help increase support for research and accelerate the development of cures for patients of all rare diseases.
To learn more about Chansen’s journey, you can follow him at facebook.com/chansenschampions.