How One Student’s Battle With A Rare Disease Led Her To Public Health
Clarisa Medina was in seventh grade and about to have her tonsils removed when her family found out she had hemophilia.
“The doctors said that there was a 50 percent chance of dying from the removal surgery, and my parents were shocked,” Medina said. “They thought the worst I would have to deal with was eating ice cream and lying in bed.”
Medina, a representative on Chancellor John Sharp’s Student Advisory Board, will graduate this May with a master’s degree from the Texas A&M School of Public Health with a concentration in Health Policy and Management. Having hemophilia has greatly affected how she thinks about public health.
Hemophilia is a rare disease that prevents blood from clotting and can turn a minor accident like getting a cut while shaving into a crisis. The disease is generally inherited, but it was a shock to Medina’s family because neither of her parents have hemophilia. They unexpectedly discovered they were carriers after having children.
“I have mild hemophilia, which means it’s not as life threatening as it is for my brothers,” Medina said. “But if I ever get in a car crash and I’m badly injured, it’s probably all over for me because when I start bleeding, I won’t be able to stop.”
Because hemophilia is so rare (only about 20,000 people in the United States have it, about 0.00006 percent of the population), there is a general lack of funding for research on the disease, and medication is very expensive. Because so many members of her family have hemophilia, they have to cut costs by having ‘injection parties’ where Medina and her brothers inject each other with medicine that helps control their hemophilia instead of having the injections done by a medical professional.
“For me, it’s heartbreaking to come home and see a room full of medicine instead of a living room,” Medina said. “We decided to offset the cost by receiving our injections at home.”
Her family’s struggle with hemophilia helped put into perspective for Medina many of the public health issues surrounding the disorder and those of other rare diseases with small support circles and expensive and recurring treatment.
“I realized that things are significantly bigger than myself,” Medina said. “I know that local victories positively impact public health, but I want to do more. My goal is to make a difference at the federal level, and my studies at the School of Public Health have shown me that it is possible.”
Medina’s passion for making a change was recognized when, after graduating her high school, she received a scholarship from the Gates Millennium Foundation, an organization that seeks to help minority students become experts in fields that they are typically underrepresented in.
In the summer after she graduated, Medina applied for and obtained an internship at the United States Department of State and was placed in the Bureau of International Narcotics and Law Enforcement, intending to pursue a career in politics and international diplomacy.
However, at the first university Medina attended, St. Mary’s College in Notre Dame, Indiana, she found herself struggling to maintain her grades and be a dual athlete and dispassionate about her choice of major.
“I went from a 4.3 GPA in high school to about a 1.9 my first semester at Saint Mary’s,” Medina said. “You have to understand that I came from a high school with few economic resources where textbooks were a rare commodity. I was not prepared academically for college.”
Feeling disappointed in herself and her academics, things got worse when Medina began playing softball at Saint Mary’s. In her first game of the season, Medina attempted to catch the ball over a waist-high fence and ended up flipping over the fence, landing wrong and tearing both of her Labrum muscles. Not only was Medina unable to play softball with her team, she had to have two hip surgeries that kept her occupied for four months. She was lucky though, in that the surgery was relatively smooth because there weren’t a lot of veins where she was injured.
“It was extremely hard for me because I had to use a walker, and I had to go through physical therapy,” Medina said. “I felt incredibly vulnerable because my parents had to take care of me again, so soon after I had graduated high school.”
After recovering from her injury, Medina came back determined and eager to complete her undergraduate degree. She graduated from Saint Mary’s with a Bachelor of Arts and looked for universities where she would be able to earn her master’s degree in public health. Her parents advised her to apply to Texas A&M.
“I’ve loved my time at A&M and am excited for the future,” Medina said.
While studying at Texas A&M, Medina applied for and was accepted into an internship with the U.S. Centers for Disease Control and Prevention (CDC), where she worked with CDC Senior Public Health Analyst Montrece Ransom to organize and create the State, Local, Tribal and Territorial Attorney’s Institute, which works to train attorneys in a public health practice and law via a boot-camp style program. She also organized ‘Disease Detective Camps’ where high school students came to the CDC, learned about public health and participated in a disaster scenario, such as a plane crash.
But most recently, she has been working with the Texas A&M University Health Science Center Governing Board to raise funds for a memorial for Health Science Center students who have passed prior to graduating from Texas A&M. The fundraising is being done via profit shares as well as an online marketplace with Health Science Center merchandise.
When presenting the 2018 Departmental Achievement Award for the Department of Health Policy and Management this week, Department Head Michael Morrisey, PhD, also highlighted that Medina is the first ambassador for the Association of Schools and Programs of Public Health from Texas A&M.
“As one of the most active students in the department, she has served as part of the Public Health Emergency Preparedness Law Roadmap Tour of Texas and completed a research project examining statewide obesity prevention policies in Texas,” Morrisey said.
After graduating, Medina wants to earn her doctorate in public health with help from her Gates Millennium Foundation scholarship and then pursue a law degree so she can be a specialist in public health law. Ultimately, she hopes to influence federal public health policy by working at a federal health agency like the CDC.
“Working at the federal level means I am making a larger impact that trickles all the way down to the states, towns, to communities, then to the individual level,” Medina said. “I simply want to leave this nation healthier than before.”
This story by Zach Kluver originally appeared in Vital Record.