Care About Rare by Krista

Care About Rare by Krista - December 2016 Scholarship Essay

When I thought of a “school accomplishment,” a variety of goals came to mind. As a student who is pursuing a Ph.D. in Education, I have experienced myriad academic accomplishments. I have published articles in several international journals, I have a 3.95 GPA, and I have received several awards for teaching. However, the school accomplishment that stood out among the rest was an experience that helped to raise awareness for the Rare Disease Community. As a graduate student in the field of Adult and Community Education, I was required to take a course titled Teaching Students with Disabilities. This course provided me with the opportunity that I wouldn’t soon forget.
My story is not a typical one. When I began college, I thought I was just like any other student. I took a full-time course load and I worked a part-time job. After graduation, I taught full-time while I completed my Master’s degree. In 2009, things began to change. I fell ill with H1N1 (Swine Flu) when it went around the school where I was teaching. Since then, my health began to rapidly decline. It took several years for specialists to come up with a diagnosis. In 2014, I was finally diagnosed with a rare condition called Primary Immune Deficiency. This condition is caused by a genetic mutation in a recessive gene. The time that I had spent undiagnosed caused me to experience successive illnesses, each worse than the last, the most severe of which required an appendectomy. Primary Immune Deficiency (or PI) affects 1 in 20,000 people and causes a patient’s immune system to underperform. In short, the immune system is unable to create the antibodies that it needs to ward off illnesses and infections. Additionally, it may create antibodies that attack the body’s organs. As of 2016, I was been diagnosed with PI, rheumatoid arthritis, and Hashimoto’s disease. Although there is no cure for this disease, I undergo weekly immunoglobulin replacement therapy in order to replace the antibodies that my immune system does not make. This helps to prevent further illness and infection.
One of the requirements for the course Teaching Students with Disabilities was to volunteer. When I was provided with the opportunity to volunteer for a department that served students with disabilities, I took the opportunity to raise awareness for patients with Rare Diseases. I collaborated with the Student Support Services department to hold a campus-wide Rare Disease Day, which is a national day that is held on the last day of February each year. I ordered materials from the Global Genes Project (www.globalgenesproject.org). I recruited students and faculty to pass out ribbons to students on campus. By the end of the day, we had passed out more than 200 ribbons and had educated hundreds of students and faculty about the importance of diagnosis and treatment for rare diseases. Through this process, I met several students who have family members with rare diseases as well. Perhaps the most significant impact was the opportunity to interact with nursing students and staff. I shared resources with the nursing staff so they could pass the information on to their students. This is especially important because the majority of medical professionals are not trained to identify rare diseases. For me, this project was not just a course requirement, but was also an opportunity to help other students like me.
Although this accomplishment was not academic, it provided me with the opportunity to make a difference in my local community. Because the event was so successful last year, the Student Support Services department has asked me to make it an annual event. I am proud of this accomplishment because it gave me the opportunity to provide a voice for a minority population. When thinking of diversity in a student population, many students and faculty may not think of students with rare diseases. Often, these students and their instructors may not be aware of the accommodations that they can receive from the college. Continuing to educate students about rare diseases and the resources available to them will help these students to understand that they are not alone and can encourage other students to be more understanding of a diverse population and to "Care About Rare."