Graduation Year


Document Type




Degree Name

Doctor of Philosophy (Ph.D.)

Degree Granting Department

Adult, Career and Higher Education

Major Professor

Waynne B. James, Ed.D.

Committee Member

Jeffrey D. Kromrey, Ph.D.

Committee Member

Janet C. Richards, Ph.D.

Committee Member

William H. Young, Ed.D.


mastocytosis, orphan disease, autoethnography, diagnostic process


This study was an autoethnography authored in the form of layered accounts. It was based on my journey toward a correct diagnosis with the rare, orphan disease known as mastocytosis. The purpose of the study was to utilize my experiences to investigate mastocytosis from the perspective of an individual diagnosed with the disease. Furthermore, I investigated what ways and how much adult education philosophies and principles (e.g., humanistic, behaviorist, and adults’ involvement in learning) may have been salient in my being correctly diagnosed to examine not only the disparities, but also the similarities in the way each physician I encountered approached the diagnostic process.

The layered accounts—written in three distinct layers—revealed my perception of my journey toward a correct diagnosis as blind, discouraging, and isolating (layers one). Also noted in layer one are detailed descriptions of my bouts with chorea (extreme, uncontrollable spasms affecting the limbs), which was rarely discussed in the literature. The responses of those around me (layer two) ranged from shock, genuine concern, uncertainty, judgement, dismissal, disbelief, humor, anger, hurt, and positivity. Pertinent literature on mastocytosis was juxtaposed with my experiences divulged in the first layer and highlighted similarities in the approach to the diagnostic process taken by the physicians who treated me and multiple disparities between what the literature states my experience as someone diagnosed with mastocytosis versus my actual experiences (layer three).

In addition to identifying the most salient adult education philosophies and principles in my journey to a correct diagnosis, this research identified parallels between the facilitator-learner relationship in adult education and the physician-patient relationship. The results implicate three principles and three philosophies salient to my correct diagnosis, along with one philosophy and one principle which were the most salient. An overarching theme of self-directedness emerged along with a multiple disparities between what the literature states my experience should have been versus what took place as I sought medical care.