Kayla Case Study Familial Mediterranean Fever

Introduction:

Imagine having a disease, but not knowing about it for years. This was the case of the individual that I interviewed for this research. Kayla has Familial Mediterranean fever (FMF) also known as the Armenian disease since 1 in 5 Armenians possess the gene for it (Sarkisian et al. 2008). Discovered in 1997, FMF is a hereditary inflammatory disorder that produces physical pain that affects everyone with the condition differently (Fisher et al. 2003). In Kayla’s case, she has joint pain and abdominal inflammation that induces severe pain lasting three to four days. These symptoms are not concurrent with one another, however they both have influenced her behavior and choices throughout her life.

How the illness experience challenged

She explained that she would get bruises on her legs after training that would take days or weeks heal. Instead of being distressed about the situation she decided to educate others about FMF, which became an essential part of her illness experience. One way she did this is through her high school senior project. “Not a lot of people knew about it and I wanted to change that a little bit. I created a website that had information about FMF and did a presentation on it.” Entering her teen years Kayla began to get a better understanding of her illness which compelled her to share her story. It was significant for her to tell her story since she suffered through it majority of her childhood and continues to affect her today. Finding out more information about the illness gave a new meaning to her life. She decided that she wanted to continue informing others about her illness experience by joining the UCLA Medical Center research clinic. Kayla explained that once a year she would attend a meeting with the researchers of FMF and discuss her condition. “They would ask questions about my condition and how I have been coping with it. I would give them information like how frequently I would get attacks because the medication controlled the attacks, not prevent them. If I miss three days I would get an attack.” Kayla wanted to provide information for physicians to help them better understand how the illness can affect an individual 's’ life. Kayla’s interpretation of her illness experience propelled her to educate others. In short, this phase of Kayla’s illness experience illustrates several features of quest narrative. In quest narrative “individuals accept illness and seek to use this, believing that something is to be gained through the experience (Whitehead 2006). As she got older Kayla accepted that what she had was a genetic disease that could not be cured. Through