Harper, Lydia

Start date:
October 2013
Research Topic:
An ethnographic study of Leber hereditary optic neuropathy: exploring the experiences and perceptions of children, young adults and their families.
Research Supervisor:
Professor Adam Hedgecoe, Professor Joanna Latimer
Supervising school:
Ysgol y Gwyddorau Cymdeithasol,
Primary funding source:
ESRC Studentship

My research will undertake an ethnographic study of a rare genetic eye condition known as Leber hereditary optic neuropathy (LHON). LHON primarily affects young males in their second and third decade; the average age of onset is 15 years old. The condition characteristically results in bilateral sight loss over a period of 6-12 weeks from the initial onset. There is currently no cure for the condition and treatment options to slow the progress of the condition are limited. Qualitative research exploring the organisation and everyday practices of the genetic ophthalmology clinic is absent from the literature. Similarly there has been a dearth of qualitative research undertaken to explore the impact on the lives of children, young adults and their families following a sudden and dramatic loss of sight caused by LHON. This research aims to remedy this by tracking LHON across multiple sites to understand the aetiology and trajectory of the condition, and uncover the multiple interpretations attributed to the condition by clinician and families.