Most people don’t think about illnesses or diseases unless they’re directly affected. After all, who wants to worry about things that will likely never be a problem? Rare diseases obviously do not get much attention from the general public, but there are important reasons for information about rare diseases to be spread across the community.
Kane Duckworth did not know much about a form of epilepsy called Lennox-Gastaut Syndrome until his little brother was diagnosed with it. Then he knew he had to do something to increase awareness of this serious disease. His decision to take action, increased awareness of his brother’s disease to the whole community.
- Faster Diagnoses. Increased awareness means higher rate of faster diagnoses. Some rare diseases need to be diagnosed fast for the patient to receive life saving treatment. If people know that certain symptoms or symptoms together matter, then a faster diagnosis is likely.
- Increased Research. The more awareness an illness has, the more likely it will become a research project. Who knows the breakthrough that can bring relief or even a cure for patients? We only know that scientific breakthroughs cannot happen without the research in the first place.
- Funding for Research and Family Relief. Most people won’t donate money to a cause they don’t understand. Kane’s efforts to elevate awareness let his community know why LGS deserves to be recognized and why research should be funded.
Kane’s brother Ben Duckworth, nine, was lucky to be diagnosed early, and to have a big brother who cares enough to help raise awareness of LGS.
Every year, March 26 is designated “Purple Day,” the international day for epilepsy, including LGS. People around the globe take time to raise awareness and funds on this day.
Kane decided to spread awareness and raise funds at his school with Purple Dress Down Day, the students all wore purple and collected donations for the Epilepsy Society. After seeing Ben deal with the symptoms of the disease which include seizures in children, the students were excited to do something to increase awareness and research for a cure.
