Hetlena Johnson, Ed.S is a Digital Resource Coordinator for Richland School District 2 in Columbia, SC. Her career in education spans a fifteen-year period in which time, she has accomplished much as a classroom teacher, professional development trainer, data analysis and research field coordinator, speaker and certified National School Reform Faculty Critical Friends Group Coach.
Under the leadership of Hetlena, Lupus Columbia South Carolina (LCSC), the nonprofit she founded to raise awareness of and advocacy for lupus patients like herself in South Carolina; caught the eye of The National Lupus Foundation of America, Inc. (LFA) and is now the only South Carolina lupus nonprofit associated with the national organization. Hetlena serves as the Chief Volunteer Officer of the newly transitioned LFA South Carolina Community Partner (LFASCCP). Hetlena has been integral in bringing lupus to the forefront of awareness in South Carolina. She leads and coordinates the training of support group leaders in the state of South Carolina, while continuing to facilitate the transition from Lupus Columbia SC to LFA SC Community Partner. Her work with lupus sparked a partnership with the Institute for Partnership to Eliminate Health Disparities (IPEHD) Arnold School of Public Health of the University of South Carolina to spread the word on the development of a South Carolina Lupus Registry.
Hetlena's work in education facilitated the launch of two successful businesses. Hetlena's flagship company, The Lupus Liar, allows her to educate, advocate and raise awareness about lupus as a highly sought after speaker, critically acclaimed author, presenter and trainer. She is devoted to helping others face life with an open mind, heart and spirit. She also founded her publishing company, JH Johnson Books, which has successfully published several books to date.
A nationally renowned speaker, author, and professional development trainer, Hetlena has presented at several conferences around the country. Her twenty-two-year battle with lupus and her work as the Chief Volunteer Officer for LFA SC Community Partner places her in high demand as speaker for lupus education and advocacy conferences. Her work as an instructional technologist in the field of education, has allowed her to travel all over the country training educators to be innovative and daring with the use of technology in the classroom. She has presented at the Medical University of South Carolina in Charleston, SC as a keynote speaker for Lupus Patient Education Day, TEDxDenverED in Denver, CO and Lupus House Party at the M.U.S.C.L.E research group at MUSC just to name a few.
Hetlena was diagnosed with Systemic Lupus Erythematosus in early 1993. The beginning of her walk with lupus was painful and confusing. During her senior year in high school, Hetlena was placed as a home-bound student and had to complete her last year of high school from the confines of her bedroom. Not discouraged, Hetlena completed her senior year with honors. She graduated from the University of South Carolina-Aiken campus with a bachelor’s in Business Education and double minor in Business and Marketing. She then went on to complete her graduate studies at Walden University with a Master of Science in Educational Technology, followed by an Education Specialist degree from Nova Southeastern University in Computing Technology in Education. She has accomplished all of this while continuing to battle the ever changing effects of lupus.
She has published several books and is currently working on the soon to be released "Keeping Up With Lupus: A Digital Guide." Her continued journey inspires those who know her to keep close to the heart, life's ups and downs, happiness and trials. She continues to see her physicians regularly. Nath The gift of a healthy life is not often received. Yet, the art of loving the life that she has and the health that she can achieve, makes Hetlena's life all the more special.