Final Project: Thalassemia

I chose to analyze thalassemia for the final project because I find it to be a particularly interesting disease, but also because I am a heterozygous carrier of the gene that causes the disease. Thalassemia is a group of related blood disorders that that cause anemia, and compromise the hemoglobin’s ability to carry blood efficiently. Sub-groups of thalassemia are alpha, beta, E beta, and sickle beta thalassemia. Certain types of thalassemia are more common in specific regions. For example E beta is more common in Southeast Asian countries, and sickle beta is more common in countries that surround the Mediterranean Sea, which accounts for why sickle beta thalassemia is often called Mediterranean anemia. Thalassemia is an autosomal recessive hereditary disease, which means if both parents carry a copy of the mutated gene that causes thalassemia, it can be passed on from parent to offspring. This is the most common method of contracting thalassemia (Cooley’s Anemia Foundation). Because of thalassemia’s regional differences, and hereditary mode of contraction, many people could be unaware they carry the gene for this disease, and have the potential to harm their future offspring. Nearly every aspect of this disease could be analyzed though the lens of medical anthropology, from the genetic aspect of thalassemia, to the culture and personal experience of patients living with thalassemia.

Considering the ecological and biological approaches to medical anthropology, thalassemia can be understood as a genetic disease that has strong connections to region and race. In the article by Gravlee (2009), the notion of race being bound by biology is questioned. While it is evident that carriers for sickle beta thalassemia are consistently found to have ancestors from the Middle East, and southeastern Europe, near the Mediterranean Sea, it is unclear whether there are cultural factors involved as well. I learned from the second week of study material how the Pima tribe of Native Americans became racially inclined to develop diabetes, because of their reliance on government-provided food (Bad Sugar). Medical anthropology could be used in a similar way to analyze cultures that are predisposed to thalassemia and find any ecological reasons for their problems.

Because thalassemia is often regionally concentrated, it would be typical for patients to share ethnic and cultural beliefs from that original region. For example, patients with E beta thalassemia are most often from Southeast Asian countries, so it would be important for an anthropologist to take the ethnomedical approach into account when considering the needs of patients with E beta thalassemia. The New York Times article by Brown about clinical shamans is the perfect example for this situation. The article explains how a Laos patient with diabetes in a California hospital is visited by a shaman, who comforts the patient by protecting his soul from evil spirits. It has been observed that when patients are kept spiritually and emotionally healthy, they recover their physical health more quickly as well. This method would likely be useful for patients of thalassemia from any culture.

The experiential approach to medical anthropology would be just as useful for thalassemia, as it would for most other diseases. Whenever a physician can understand their patient’s personal experience with their disease, they become better equipped to treat them. This is evident in the Werner article that uses women with chronic pain as an example. A patient’s story about their struggles with thalassemia would likely have a similar effect on physicians who are trying to provide the correct treatment for them. Additionally, the use of illness narratives could be beneficial for patients with thalassemia, as well as pregnant mothers who carry the gene for thalassemia and are concerned about passing the gene to their child.

The article by Conrad and Potter gives a great example of the biomedicalization of ADHD and helps the reader understand how modern medicine can be pushed too far. However, there is no simple pharmacological cure for thalassemia, and it does not seem that the disease is especially medicalized. There is still value when it comes to the critical approach, though. Many couples who have history of thalassemia have opted to have potential embryos checked for the thalassemia gene and then choose which they want to use for in vitro fertilization. While this advanced medical procedure is ultimately beneficial for the couple and their child, it can be seen as the biomedicalization of fertilization technology and its ethics could be questioned. This brings up the same issue of ethics and the control of our bodies through modern medicine that Conrad and Potter explore.

The applied approach to medical anthropology is probably one of the most helpful methods when dealing with patients with thalassemia. As I have explained before, thalassemia has origins in very specific regions, depending on the sup-group of the disease. When a physician treats a patient with a type of thalassemia, a clinical medical anthropologist can use the applied approach to identify what cultural and ethnic background that patient may come from, based on their disease. The anthropologist can then use this information to help the physician make better judgments on how to treat the patient with their cultural background in mind. The importance of cultural competency is outlined in Kleinman’s article. Cultural competency in health care is crucial for medical professionals, and helps them understand why a patient does not agree with their treatment, or why they don’t schedule more appointments for needed care. Because patients with thalassemia can come from many diverse cultural backgrounds, it is important for anthropologists to work with physicians to find the best way possible to for the patients to be understood and treated.

All five of the approaches to medical anthropology are essential for an effective health care system, but I believe the ethnomedical and applied approaches suit the demographic of thalassemia patients the best. Because of the genetic nature of thalassemia, only certain ethnic groups are prone to the disease. The ethnomedical approach takes into account the religions and customs of these ethnic groups, which, when they are catered to, aid in the patients recovery. Also, when considering the applied approach, these same cultural distinctions can be understood in an effort to more efficiently treat the patient. Through the practice of medical anthropology, people with thalassemia can receive the treatment that is best suited for them as a patient, and as a human being.

Cooley’s Anemia Foundation “About Thalassemia” http://www.thalassemia.org/learn-about-thalassemia/about-thalassemia/

Clarence C. Gravlee. “How Race Becomes Biology: Embodiment of Social Inequality” AMERICAN JOURNAL OF PHYSICAL ANTHROPOLOGY 139:47–57 (2009)

“Bad Sugar” video. Week 2. http://anthropology.msu.edu/anp204-us16/lecture-videos/unnatural-causes-4/

Patricia Leigh Brown. “A Doctor for Disease, A Shaman for the Soul” New York Times. Sept. 19, 2009

Werner et al. “‘I am not the kind of woman who complains of everything’: Illness stories on self and shame in women with chronic pain” Social Science & Medicine 59 (2004) 1035–1045

Peter Conrad and Deborah Potter. “From Hyperactive Children to ADHD Adults: Observations on the Expansion of Medical Categories” Social Problems, Vol. 47, No. 4 (Nov., 2000), pp. 559-582

Arthur Kleinman and Peter Benson. “Anthropology in the Clinic: The Problem of Cultural Competency and How to Fix It” PLoS Med (2006) 3(10): e294. DOI: 10.1371/ journal.pmed.0030294

 

 

 

 

 

 

 

 

 

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