degenerative disease – Health Story Hub

Family silence around disability complicates brothers’ bond

In this brief interview, Terrence Ho describes his relationship with his brother Torrance, who was diagnosed with Duchenne muscular dystrophy as a child and passed away at the age of 37. The interview addresses family relationships, cultural stigma, and Terrence’s roles as caregiver and advocate for this brother. Terrence also describes Torrance’s talents as an artist and power wheelchair hockey goalie. Terrence has advice for other siblings about how to manage family dynamics, emotional stress, and patient advocacy. The interview reveals what an important role siblings play over time when a child has a degenerative condition, and also speaks to the difficulty parents may have in talking to children about their brother’s or sister’s disabilities. There are several mentions of types of health care and services that were provided or that would have been useful.

This brief story provides insight into challenges and rewards of the sibling relationship, one that is often overlooked. It could be used to prompt discussions about family caregiving, family communication, and ways health care providers can support family caregivers.

Family Stories of Tay-Sachs Disease

The Cure Tay-Sachs Foundation website contains many resources including information about the disease, carrier statistics, family stories, research initiatives, and fundraising opportunities. Tay-Sachs disease is a rare, fatal genetic condition that destroys nerve cells in the brain and spinal cord primarily in babies and young children. It has a history of affecting people of Ashkenazi Jewish descent but now is seen in other ethnic backgrounds. If you click on the “family stories” tab, you can view over twenty personal narratives of children who were diagnosed with Tay-Sachs, often written by parents. The stories are divided into three short sections documenting the journeys from when they first realized something was wrong, how the illness progressed, and what the family’s ultimate decision was in how to handle it. One of the stories is told from the perspective of an adult with late onset Tay-Sachs as well as bipolar disorder, and she describes the experience of dealing with both conditions simultaneously. Another feature of this website to explore is the “drawings of our kids” tab. You can click on any of over fifty names to see an original drawing of children who have died from Tay-Sachs, all drawn by one of the grandfather of one of the children. The family stories would be a very impactful reading assignment in a course about genetic diseases to increase awareness about the many different ways the same disease can affect individuals and families. It could also fit into a bioethics course to prompt discussions or even essays on if/when it is ethical to stop providing treatment and medical intervention for a patient who has a terminal illness with serious impacts on quality of life for the patient and family.