Written by Aarti Anugonda
Edited by Anirudh Koneru
Published on 9/29/2021
September is Sickle Cell Awareness Month! In order to raise awareness for sickle cell disease (SCD), we are sharing Alexis's story this month.
“You’re not alone.” On a path strewn with disappointments, immense personal growth, and determination, Alexis Jarrett chooses these words to convey the biggest lesson she’s learned so far. Being part of the rare disease community and having sickle cell disease has presented Alexis with hurdles most have never had to cross. From accepting limitations to dealing with a flawed healthcare system to proving herself to others, Alexis has seen it all. However, like a flower in the midst of weeds, Alexis has surpassed many such obstacles to find opportunity, happiness, and the power of focus, faith, and family. Her story is one to be heard.
“Be Your Own Advocate”
Alexis Jarrett’s story starts in the late 1980’s, in Columbus, Georgia. At the mere age of 6 weeks, Alexis was diagnosed with sickle cell disease, also known as “SCD”. At 3 months, she had her first pain crisis. SCD is a disease of atypical blood cells. While normal red blood cells are usually disc-shaped, SCD blood cells are “sickled” and stiff, making blood vessels prone to clots. Pain comes into the scene when such clots deprive organs of blood, oxygen, and energy. This being said, it’s understandable that the pain crises acted as a limitation in various aspects of Alexis’s life. As a child, her mind was set on participating in track and dance, but the reality of her condition led her to choose the clarinet instead. She’d miss several days of school when sick, and her social life wasn’t as forthcoming as others. Through all of this, her family was her rock, and was just as strong as she was.
Quickly enough, both Alexis and her mother realized that strength was just what they needed to face the most grueling part of having SCD: the healthcare system. As exasperating as the healthcare system is for all rare disease patients, its treatment of minorities is what shaped Alexis and her mother’s experiences and opinions of the system. While her mother’s doubt was present prior to Alexis’s birth, Alexis saw the complacent yet confrontational attitude of the hospitals she went to. When she asked for tests to be done, doctors would hold off, giving more credit to the labs than the patient. Upon asking for pain medications, she’d be accused of addiction. However, being the bold and determined person that she is, Alexis learned to be her own advocate, not just for healthcare, but for her body, mind, and will.
“
Me” to “Us”
As it turned out for Alexis, advocacy was her calling. After a tough yet awakening college experience, Alexis accepted that a full-time, nine to five, five days a week job wasn’t the right fit for her. Career and education-oriented as she is, Alexis grasped the chance to create her own freelance agency, dictating her own hours and projects, and once again, being her own advocate. Soon, her efforts transfigured from “me” to “us” as she started advocating for other SCD patients and the American Red Cross. Enlightened and at peace with her relationship to God and Christianity, she is now a minister as well, adding to the list of ways in which she touches the lives of others. Though the journey hasn’t been one of ease, or perfection, or simplicity, it has been one of growth, learning, and struggle. A story of struggle is a story of hope and inspiration, and Alexis Jarrett is nothing if not inspiring.
Sharing Stories
We believe these stories are important for others to hear, not only for awareness of the disease itself, but also for the support it provides to every patient. Thank you so much to all the people who share their stories with us! We truly appreciate your strength and not only are you contributing to our organization, but you are also furthering the awareness of rare diseases as a whole.
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Thank you for reading!
References:
Healthwise Staff. “Sickle Cell Crisis | Michigan Medicine.” University of Michigan Health, 23 Sept. 2020, www.uofmhealth.org/health-library/hw253529.
Jarrett, A. (2020, October 9). Personal interview