Living with Huntington’s Disease

Living with Huntington’s Disease

Content type: Health story

This is a five-minute video narrated by a 46 year old woman who acts as an in-home caregiver for her father, who has Huntington’s disease, a terminal genetic disease that children have a 50% chance of inheriting from their parents. She describes the disease as “having Alzheimer’s, Parkinson’s, and ALS all together.” Panning from the bedroom to the kitchen, the video follows this woman throughout routine moments of taking care of her dad, such as getting him out of bed and feeding him. In between clips, statistics and factual information about Huntington’s are flashed on the screen. Recently, she found out she had the gene and is beginning to get symptoms herself, but is in a clinical trial for a drug. This is a very moving, emotionally impactful video that also provides a lot of basic information about what it is like to live with Huntington’s and take care of someone who has it.  It is rare to find such a nuanced blend of the emotional and the informational, as well as a perspective of a person taking care of someone with the very same disease, just at different stages. It would be useful to play for discussion material in a class about genetic diseases or family members who act as caregivers or in a discussion about how personal narrative and statistical information can be combined to communicate a message. It could also be used as an example video in an assignment for students to create narratively infused informational interview videos about a certain disease.

Read more...

Abecedarian: On Purchasing and Receiving Genetic Information from Two Commercial DNA Companies

Abecedarian: On Purchasing and Receiving Genetic Information from Two Commercial DNA Companies

Content type: Health story

This twenty-six line alphabetically organized (abecedarian) poem employs image-rich metaphors circling around themes of colonization creating diaspora, disconnected self image, and fragmenting familial connections over time. Korean American poet Yung Shin uses phrases like “ethnographic afterlife,” “genealogical disruption’s (in)ability,” and “sweet peace of the unborn” to convey messages relating to her line of heritage and the demarcations of life, death, and legacy that define it. She touches on concepts ranging from genes to curses to the Neanderthal Valley, all emphasizing tension between past and future, stringing the present along in perpetual liminality. A sorrowful, thought-provoking poem that embraces uncertainty, Yung Shin’s work is packed to the brim with meaning, where every word counts. This poem would be useful in an anthropologically focused health class because it could broaden perspectives of how interwoven our stories are with our ancestors, as well as a genetics course. In the midst of being taught highly factual information, a short reading reflection assignment on something so ambiguous could be not only a refreshing change of pace, but a moment of inspiration.

Read more...

Meet Marleah: Testing positive for the BRCA2 gene at 25

Meet Marleah: Testing positive for the BRCA2 gene at 25

Content type: Health story

Marleah’s health narrative comes from the CDC.gov website. She discovered she had the BRCA2 gene mutation at age 25. Marleah discusses her navigating the challenges of motherhood while considering surgery after completing her family. She chose to manage her breast cancer risk through frequent screenings and lifestyle choices rather than opting for preventive surgery. Inspired by her mother’s own battle with breast cancer and her own gene mutation discovery, she became a university professor specializing in hereditary cancer research. Her work focuses on understanding the emotional impact of genetic uncertainty and developing strategies to help individuals cope. The narrative highlights the complexity of decision-making in genetic disease management and underscores the importance of personalized approaches. 

This narrative could be used to explore the intricate decisions patients face when managing a genetic disease, specifically a BRCA2 gene mutation. Marleah’s story highlights the complexity of decision-making in genetic disease management and underscores the importance of personalized approaches. As a mother, Marleah faced certain ethical dilemmas when it came to decisions about her own health. This story could also be useful for those who are forced to make similar decisions.

Read more...

Jessica’s story: “It isn’t just dementia that’s a terminal diagnosis – life is”

Jessica’s story: “It isn’t just dementia that’s a terminal diagnosis – life is”

Content type: Health story

Jessica delves into her experience grappling with the possibility of inheriting familial Alzheimer’s disease, a rare, inherited form of the condition. Jessica shares her decision-making process, including participation in observational research, contemplating genetic testing, and the emotional impact of receiving the test results. The story not only highlights the unique challenges faced by individuals with a genetic predisposition to dementia but also sheds light on the complex ethical and emotional considerations surrounding genetic testing. Jessica learns she does not carry the gene, leading to a mix of relief and survivor’s guilt. The narrative concludes with an insightful reflection on the importance of embracing life regardless of a terminal diagnosis and offers support to those facing similar decisions.

Students can analyze the emotional, ethical, and practical dimensions of genetic testing, exploring the author’s motivations, challenges, and the aftermath of receiving the results. The story prompts discussions on the broader implications of genetic testing, including family dynamics, reproductive choices, and coping with survivor’s guilt.

Read more...

Mackenzie: My Faulty Gene

Mackenzie: My Faulty Gene

Content type: Health story

This narrative tells the story of Mackenzie, who, from a young age, was actively involved in raising awareness and support for Huntington’s Disease (HD) due to its prevalence in their family. Mackenzie’s mother, grandfather, and aunt had all been affected by HD, prompting a personal decision to undergo predictive genetic testing at the age of 18. Contrary to expectations, Mackenzie tests negative for the HD gene, leading to a profound shift in life plans and a reevaluation of personal goals. The narrative explores the complex emotional aftermath, including feelings of being lost and survivor’s guilt. Despite the challenges, Mackenzie discovers a renewed purpose in advocating for the HD community and gratitude in the knowledge gained through genetic testing.

Students can analyze the challenges and opportunities presented by genetic testing, exploring the impact of results on personal identity, life goals, and community engagement. The narrative also raises important ethical considerations surrounding predictive testing and the potential psychological effects on patients. 

Read more...