Attending a general interest conference or workshop: 3 points, Jadyn Settles Co 29'

 

On September 9th, I attended the conference "The Future of Sickle Cell Disease: Research, Treatment, and Awareness" at the Morehouse School of Medicine. I attended a panel discussing the impact of sickle cell on patients and the necessary adjustments to the everyday life of those diagnosed with it. The panel consisted of a parent of a sickle cell survivor, who was also a researcher, a sickle cell survivor, and a doctor. It was really interesting hearing them speak about the way that the disease limits the autonomy of those with sickle cell significantly. I noted various things like the difficulty in finishing school, chores, and even completing leisure activities, particularly during pain episodes. It was suggested that while those with Sickle Cell want to persevere, and live a “normal” life, there needs to be a certain level of accommodation when it comes to doctors, hospital visits, medical trials, and experiencing symptoms that all can interfere with a person’s everyday living.  This reminded me about my research this summer at Carnegie Academy, where I completed a capstone project on CRISPR gene editing for Sickle Cell disease. I found that on average, a person with Sickle cell spends about $1.2 million on treatment of the disease. It is extremely disheartening to see how a genetic disease can cost a person so much money, time, and their well-being. I believe more money should be invested in technology that develops treatment techniques for the disease, like gene editing, in order to combat such life-altering diseases.