Friends, Support, And Lupus Awareness

When I returned to school in the fall after my diagnosis, some of the teachers and students knew about my experience in the hospital. I had nothing to worry about because Horizons had a very compassionate culture. One day, in psychology class, I came out to my class about my diagnosis after the members of my project team did not contribute to the assignment.

My school held a lupus assembly

The team members were sympathetic, and my administrator thought it would be a good idea to hold an assembly on lupus. She invited my support group leader, Kathleen, who was an author, nurse, support group leader, and spiritualist to speak to the entire school about lupus. During the presentation, the grade school, middle school, and high school were in attendance. Kathleen explained the condition using an animated film and allowed me to tell my story. Kathleen leads the support group for newly diagnosed patients and the young adult support group in the metro Atlanta area for the Lupus Foundation of America, Georgia Chapter.

Kathleen designed a patient self-management program for the Arthritis Foundation and she wrote several books on spirituality and living with a chronic illness. Kathleen guided my way to college by teaching a one-week patient management program just weeks before I move to college and threw me a going away party. Kathleen took what she knew as a nurse and patient to support and guide others.

Friendships in the lupus community

After Kathleen spoke, little did I know that there was a middle school student in the room who was also suffering from lupus but had not been diagnosed. Her name was Stephanie. Stephanie was in middle school that year. I knew her by face and the next year by name after working on the yearbook. Her name sticks out because my sister’s name is Stephanie.

Stephanie reached out to me 13 years later via Facebook to tell me that she remembered my story and presentation at Horizons. She told me that she thought she had lupus when listening to the presentation but was not actually diagnosed with lupus until her senior year at Horizons. Stephanie and I talked pretty regularly and sent cards back and forth to celebrate milestones like when she was finally able to drive her car again after a prolonged period of sickness.

Stephanie and I shared a lot of similarities. We both found our desire to write while attending Horizons. She was an aspiring writer and had a passion to make sure that everyone was aware of the impact of lupus on the human body. We both lived with lupus nephritis and both had to return to our parents’ care in order to navigate our varying symptoms and side effects. Stephanie passed away in 2017, after navigating dialysis and kidney failure. Since her passing, her mother and I continue to keep in touch and together encourage the public to learn more about lupus.

My reason for advocacy

All of the work that I do to bring awareness of this condition in Georgia and around the United States; all of the work I do to improve the level of support and are for students living with lupus and my work to introduce telemedicine people who lack access to qualified healthcare is dedicated to my friend Stephanie and Kathleen, who passed away in 2016.

There is more work to do in the lupus arena, to prevent complications, prevent disease, research and establish less detrimental medications, encourage education, raise awareness, and ultimately advocate for a cure.

Jimmy Carter once said, “Each of us must rededicate ourselves to serving the common good. We are a community. Our individual fates are linked; our futures intertwined; and if we act in that knowledge and in that spirit together, as the Bible says: "We can move mountains.”   

Your prayers can heal. Your words can make a difference. Your letters can bring about change. Your heart can give someone hope and your dollars can be used to find a cure.