Researching and Living with Dysautonomia

 Gabrielle Colucci, Verrazzano Class of 2020, completed major in Nursing 

            I am a registered nurse and for the last 9½ years of my life, I’ve been affected by a little known medical condition. Throughout my time in nursing school, I became increasingly aware that many people have encountered similar struggles. From going years without a diagnosis to being told it is fake, these patients need people that believe them and who are willing to fight for them. Advocacy and awareness are essential in helping to improve the lives of such patients. For these reasons and many more, I chose to research what it is like living with a rare medical condition. 

            “What is Life Like for Patients Living with Dysautonomia? A Literature Review” focuses on the challenges and quality of life that patients with DSN face on a daily basis. Little is known or understood about DSN by healthcare professionals. Therefore, it is understandable that it is not known to the general public. Patients living with this condition can experience a large variety of symptoms that can include extreme fatigue, nausea, vomiting, fainting, irregular body temperature regulation, and so much more. Aside from fainting, other symptoms are not visible. This is why DSN is known as an invisible illness, which makes it incredibly difficult to diagnose.

            There are approximately 15 different forms of DSN and I chose five of the most commonly seen forms to research. To further my research in the future, I would examine if the rates of diagnosis change based on age or gender, and if so, why? While it is relatively common in teen-age females, additional research could focus on whether the rates are actually higher in this demographic or if the symptoms are just more prominent.

            Overall, this research educated me with an illness that I have been dealing with for a long time. I researched as a registered nurse wanting to learn about the challenges and quality of life of a patient in order to provide quality, patient-centered care. I did not take on this research as a patient, but rather a healthcare provider.