For my STEP signature project, I had the opportunity to intern for a genetic counselor, Ms. Jennifer Roggenbuck, at the Ohio State University Wexner Medical Center. I worked with patients and their families of research studies collecting data necessary for various research purposes. I oversaw many aspects of data analysis into publishable materials and editing of manuscripts for publication purposes.
I have always thought of myself as an understanding and empathic person, that I could relate to the various aspects of another person’s life. I assumed I would be able to effectively communicate with patients dealing with life-altering illnesses. However, I was sadly mistaken while I did want to empathize with the patients and their families my understanding of their pain and suffering was greatly lacking. I was naïve to think that I could begin to grasp their grief by just reading about their situation from case reports. I realized that in order to truly understand a person’s happiness or sadness I had to look beyond the paper and see the person dealing with these struggles.
At the beginning of my internship, I had the opportunity to work with patients and their families enrolled in our identification of genetic modifiers of the SMA phenotype. My initial readings on SMA or Spinal Muscular Atrophy gave me the general understanding that this disease is a genetic condition that affected the nervous system and had a wide age range of onset. The patients I was worked with ranged from infants to 70 years old, however, for the purposes of our study we needed the patient’s developmental information. Therefore, leading me to reach out and contact the mothers of these patients during their developmental years.
As I would ask the mothers to describe their child’s physical development; I could feel the heartache in their quivering voices, see through their eyes exhaustion from the emotional turmoil of seeing their child so weak and vulnerable. As the children continued to suffer from their physical ailments, so did their families from the emotional and mental stress they had borne. Interacting with the patients and their relatives, I lost the many assumptions about the simple nature of pain and suffering.
As I continued to work with the SMA patients I was given the opportunity to work on other projects as well expanding my understanding of patient concerns and needs. I was put onto a second project involving patients afflicted by ALS or amyotrophic lateral sclerosis, this disease can be sporadic or familial. Familial meaning there is a genetic component to the disease which can be passed on to the child of a patient. The patients we worked with were very concerned about the possibility of their condition being passed onto their children. I realized that through everything these patients were going through a major concern for them was how this might affect their children, the concern was heartwarming as well as saddening.
Through my STEP experience, I have a gained a better insight into the sorrow patients and their families go through when dealing with life-altering illnesses. I have developed a deeper understanding of healthcare and research practices aimed towards providing people with the best care and finding innovative solutions to health concerns. I am currently pursuing a career in medicine and hope to become a pediatrician one day. In order for me to deliver the best possible care to my patients as a future pediatrician, I needed to develop the skill set necessary to effectively communicate with adolescences and their parents. I believe through my STEP experience I have gained the initial skills for effective communication and will keep working on my skills as I continue on my journey to becoming a physician.