Complex Narratives of Individuals Living with Alpha-gal syndrome (AGS). A mixed-methods investigation: examined through self-reported data, in-person interviews, and a group body mapping art therapy intervention
Master of Arts in Marriage and Family Therapy
Richard Carolan, PhD, ATR-BC
Victoria Dobbins, MA MFT, PhD Candidate
Lisa Hinz, PhD, ATR-BC
Alpha-gal (galactose-α-1,3-galactose) Syndrome or AGS is an under-recognized chronic condition which coincides with tick-bite exposure, resulting in a unique allergy to non-primate mammalian products and byproducts (in addition to other items caring the α-gal epitope such as carrageenan, agar-agar, and nori). This paper explores the experiences of individuals with this illness, establishing psychological context for expressed symptomatology, while emphasizing the complex trauma rooted in the population’s experiences of the life-altering and life-threatening contexts associated with managing AGS. This research is structured with Acceptance and Commitment Therapy (ACT) theory and utilizes a mixed-methods approach to arts-based research with the goal of establishing a narrative for individuals living with AGS. This transformative approach to arts based research through the use of the body mapping art intervention will be analyzed alongside in-person dialogues and validated through collected quantitative survey data. The results propose a healing illumination of the experience for the population of concern in addition to the researcher, furthering the benefits of this research through the use of film representation and advocacy. The resulting film serves to directly benefit the AGS population while functioning as a call for support within legislation and increased education across support systems, community members, and health care providers.