Cultural Perceptions of Inherited Diseases

In continuation from my last blog, I want to show that the Mervar’s story connects to medical anthropology through people’s cultural perceptions.  Society assumes that a parent and child suffering from an inherited disease will experience identical symptoms and treatment. Additionally, people assume that inherited diseases should affect the parent before the child. However, Karli Mervar started experiencing symptoms when she turned five-years old, six weeks before her father. Along with the oddness of her experiencing symptoms before her father, Karli suffered from severely different symptoms. Occasionally, the left side of her body would stiffen, causing Karli to lack motor control. By the time she turned nine-years old, she “developed pneumonia three times due to difficulty swallowing” and “required a feeding tube, suffered seizures, and would go long periods without sleep” (Lewis). Unlike Karli, Karl expressed a change in personality by acting “abusive, paranoid, and unemployable due to his drunken appearance” (Lewis). He eventually “spent his final years in a nursing home” (Lewis) because of his violent behavior. Most people assume that an inherited disease will cause both the parent and child to experience similar symptoms, making the different symptoms experienced between Karli and Karl seem unusual in society.

karli-and-daddy

Caption: Karl Mervar (right) with his daughter, Karlie Mervar.

In addition, people assume, because of their cultural perceptions, that a parent and child suffering from the same disease will receive the same treatment. However, parents with a child suffering from Huntington’s disease experience difficulty in finding the appropriate doctor to treat their child. Since only 10% of children inherit the disease, “a child with HD symptoms will either be seen by a pediatric neurologist who knows little about HD, or by an HD neurologist who knows little about kids” (Nance). Usually, the diagnosis of Huntington’s disease in children occurs within two to seven years, causing parents to seem unprepared when their child is diagnosed. So, even though genetic testing might immediately and accurately diagnose the child with Huntington’s disease, the disease is rarely found in children, causing most doctors to lack the knowledge and experience to treat the child properly. Therefore, the cultural perception of inherited diseases differs from Huntington’s disease in that children might suffer from the disease before their parent and treatment differs between parent and child.

http://blogs.plos.org/blog/2013/05/30/juvenile-huntingtons-disease-the-cruel-mutation/

http://ghr.nlm.nih.gov/condition/huntington-disease

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