By Mariah Bennett | Staff Writer
The Consortium for the Awareness of Rare Disorders (CARDS), a pre-health student organization, has the goal of teaching its members about rare disorders they may encounter in patients during their undergraduate training and professional careers.
According to the World Economic Forum, it takes an average of six to eight years for a rare disease to be diagnosed. San Antonio senior Benjamin Suhl Borbon, the founder and president of CARDS, said this journey takes a large toll on patients.
Suhl Borbon said he has seen medical professionals be unprepared when it comes to dealing with and treating patients with rare diseases. Because of this, he said it would be great for pre-health students to participate in CARDS to help train for the future; this includes becoming more aware of the psychological, sociological and physiological background of what occurs when people have these disorders.
“Patients get passed from doctor to doctor and are basically just dismissed as not having anything wrong, or they’re misdiagnosed,” McGregor sophomore Kimberli Taylor, the vice president of CARDS, said.
The mission of CARDS is to “equip students with knowledge and empathy relating to under-diagnosed and/or obscure disorders.”
Taylor said CARDS, which became official in August 2021, currently has about 15 active members. The organization has biweekly general meetings; its next meeting is on Sept. 22, during which they will discuss aging and rare disorders.
Suhl Borbon said in meetings, physicians may present case studies, and undergraduate students may give presentations on particular diseases. He said in the past, Dr. Rebecca Washington, a family physician, gave two separate case studies in which doctors dismissed their patients; one of the patients had an intracranial hemorrhage from an abnormal pathophysiological cause.
“Both patients would have ended up dying had it not been for her intervention,” Suhl Borbon said. “Both were rare disorders that the patients suffered from … It’s just that kind of discussion that is led by physicians that is really valuable to us.”
Taylor said the organization also has opportunities for volunteering and mentorship.
“We have several volunteering opportunities with rare disease and rare disorder organizations,” Suhl Borbon said. “There’s the Huntington’s disease support group, the ALS … support network and then also four other types like Be The Match.”
According to the organization’s website, CARDS “will ensure the next generation of providers will be conscious of rare disorders as well as the emotional toll these disorders can cause.”
Taylor said she thinks CARDS has the broader application of just learning to be a good listener.
“I think a lot of times in medical school, they focus a lot on the biological aspects of health and health care provision,” Taylor said. “In our organization, we focus on holistically seeing the patient as a person regardless of what your prior notions of them might have been — without any type of discrimination basically.”
