Dr. Deborah Heaney, a physician in Ann Arbor, Michigan, wrote the article “I’m a Doctor. Dengue Fever Took Even Me by Surprise on Vacation”, which describes her conflict with the medical process of her diagnosis. She experienced the inhibition of a virus that was transmitted through a specific mosquito and is classified as rare to occur. She spent time endured in pain since it was hard for the medical professionals to diagnose the illness, even though the disease was discovered a hundred years ago. Being a physician herself, she was aware that her symptoms could follow the line of many known diagnoses, but what was neglected was her background (Heaney, 2024). Even when the physiological troubles are the main concern when diagnosing the person, she portrayed living proof that asking more about the patient, specifically about any recent travel to tropical environments is a key concept needed to be taken into consideration when determining what the harming illness is. What I would like to contribute to her claims is an agreement for which medical schools need to be more aware that rare textbook diagnoses may be an actual consideration when dealing with a patient. Although these diagnoses may be considered rare, it still affects roughly one billion people globally, which illustrated the active possibility of the diagnosis occurring around the world (Bonney, 2013). This includes asking more questions about the background of the patient such as medical history, recent travel, and family members with genetic illnesses, all of which can help not only help diagnose the patient but also help treat it.
Educational programs such as the RARE Compassion Program focus on widening the intellectual grasp of medical students by focusing part of their learning on rare medical instances.
This program not only increases their overall understanding of how these rare cases came to the light, but also provides needed exposure to these rare cases so that when they are licensed medical practitioners, they will not be discombobulated when they see it in the real world. A case study was conducted by the organization so that they may gather data on the importance of spending additional time on rare cases. What resulted from this study was that 91.7% of 334 student participants said that they would recommend this direction of action, representing the favor the students themselves share in adding this aspect onto their curriculum (Priolo, 2022). Even with a 0.05% chance a rare disease may occur in the medical field, that percentage taken from our global population is still millions of people, where any of them may be a patient to a newly graduated medical student, which will be oblivious to the possibility of the rare diagnosis unless he/she is introduced early in their medicinal career.
Many medical schools may not integrate the learning of rare diseases for their students, but what is overlooked is the travesty people with these rare diseases must live with. Many of these cases involve the alteration of their genetic code, which can cause many deformities in their phenotypical and physiological features. These patients also tend to endure in chronic pain which only worsens over time, while also being life-threatening. These illnesses, due to their rarity, can also take years of testing just to come up with a diagnosis that may be incorrect, and cost the patient their life if not 100% accurate (GAO, 2021). Even with these cases only impacting a small percentage of our population, that chunk can still carry the weight of millions of people worldwide, where the U.S. committed roughly $966 billion on helping rare disease cases in 2019. This may seem like a lot of money is being used in rare diseased cases, but only impact a small fraction of our population, but of that population lives are being saved, pain is being treated for those who had no say in their genetic makeup, money spent easing their way of
life with the deformities they were given. These diseases could have played a part in preventing an individual to work/attain a source of income, establish social connections, or part-take in physical activities, and so helping them in any way that will make their life better should not be limited by financials. Given these norms established when introduced with rare diseases, it only highlights the importance of treating these individuals for their pain and lifestyle, where it all can be bettered by adding the needed curriculum in modern medical schools.
To come to an end on the topic of reinforcing the rare-disease curriculum in medical schools, it is crucial for them to be well taught on various rare scenarios that may occur in their professional career, and despite the small chunk that rare diseased cases may take up, their way of life is deeply impacted, which only calls for the maximum assistance for their medical and social livelihood. Dr. Heaney was put into a rare disease case, but was not aided as strongly as she could have been since many of the medical professionals were unaware of the possibility of a rare scenario. If her doctors were efficiently trained during their time in medical school, the ideas of rare diseases, such as the dengue virus, would have been anticipated. Instead, Dr. Heaney endured tremendous pains before the doctors could find out the diagnosis, as well as its treatment. It relates to a similar way of thinking, where if you hear the steps of hooves typically people would consider the noise to be of a horse, but the fact that their minds haven’t been taught the creativity of imagination, where the sound can be from a zebra, is what is flawed in the medical school system, but with high hopes of improvement.
References
Heaney, Deborah, “I’m a Doctor. Dengue Fever Took Even Me by Surprise on Vacation.” New York Times, published April 3rd, 2024. https://www.nytimes.com/2024/04/03/opinion/dengue-fever-latin-america-travel.html
Bonney, Kevin, “An Argument and Plan for Promoting the Teaching and Learning of Neglected Tropical Diseases.” PubMed, published December 2nd, 2013.
Priolo, Manuela, “Rare Disease Education Outside of the Classroom and Clinic: Evaluation of the RARE Compassion Program for Undergraduate Medical Students.” PubMed, published October 13th, 2022.
GAO, “Rare Diseases: Although Limited, Available Evidence Suggests Medical and Other Costs Can Be Substantial.” U.S. Government Accountability Office published October 18th, 2021.
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