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Understanding Patients in the Workplace

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    At UCB, we approach clinical studies by engaging patients to understand what is most important to them. Our Medical Writing Specialist, Joy Avery, is able to tap into her experience as a patient herself in order to help UCB focus on what patients value. Read more from Joy about why she puts patients at the heart of everything she does.

    'When I began experiencing symptoms of Ulcerative Colitis (UC) in my mid-20s there was no way I could fathom how a long-term disease could affect every aspect of my life in both negative and positive ways. Once officially diagnosed, maintenance medications worked for about ten years allowing me to live life with one flare about every eight months. I was on medications which weakened my immune system, thus constantly fighting infections and waiting for the next flare to occur. Unfortunately, some of the medications caused frustrating side effects such as irritability, lack of sleep, headaches, and swelling to the facial area otherwise known as “moon face”.

    UC is a silent disease because on the outside you can look completely healthy. The suffering happens on the inside. In 2016, I was in my mid-30s and having 2 to 3 flares per year. There was a lot of blood and mucous in my stool (a common symptom of UC), and I became a “frequent flyer” in the Emergency Room. The steroids would help to control the symptoms, but my body became dependent on these drugs, and symptoms returned as soon as I was off the medications.

    Through all of this, I was very grateful to work for UCB.  Both my manager’s flexibility and the company’s positive vision towards patient value gave me a more optimistic outlook in dealing with what was happening to me from a health perspective. In my day-to-day responsibilities, I was able to relate to patients participating in our clinical studies searching for symptom relief themselves. Through being true to myself, and serving others, I was also fortunate to meet a colleague who recommended a GI surgeon.  Two procedures and several months later, I am confident that the best is yet to come.

    Hope and understanding has always allowed me to keep moving forward. Though this journey is not over, I am at a much better place. Although I still experience complications from time to time, I am hopeful that life will continue to get better and that one day we will find a cure. Working in an environment where I constantly strive to better understand and serve patients, to bring value to unmet needs, that is my passion.'

    About the Author
    Joy Avery is a clinical research professional with a strong business background developed through meeting timelines in a competitive environment and contributing to the overall success of the teams’ objectives. She works with diverse groups ranging from pharmaceutical sponsors to rest of world customers.

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