Today we’d like to introduce you to Hetlena Johnson.
Hetlena, we appreciate you taking the time to share your story with us today. Where does your story begin?
My career in education spans an eighteen-year period in which I have 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 my leadership, Lupus Columbia South Carolina (LCSC), the nonprofit charity I co-founded to raise awareness of and advocacy for lupus patients like myself in South Carolina; caught the eye of The National Lupus Foundation of America, Inc. (LFA) and was once the only South Carolina lupus nonprofit associated with the national organization. I served as the Chief Volunteer Officer of the then newly transitioned LFA South Carolina Community Partner (LFASCCP). I played an integral part in bringing lupus to the forefront of awareness in South Carolina. Although LFASCCP is no longer established, Lupus Columbia SC, along with The Lupus Liar, offers support groups within the state of South Carolina. My grassroots volunteer work with lupus in the community 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. A nationally renowned speaker, author, and professional development trainer, I have presented at several conferences around the country. I have 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.
I was diagnosed with Systemic Lupus Erythematosus in early 1993. The beginning of my walk with lupus was painful and confusing. During my senior year in high school, I was placed as a homebound student and had to complete my last year of high school from the confines of my bedroom. Not discouraged, I completed my senior year with honors. I graduated from the University of South Carolina-Aiken campus with a bachelor’s in Business Education and double minor in Business and Marketing. I 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. With God, I have accomplished all of this while continuing to battle the ever-changing effects of lupus.
Alright, so let’s dig a little deeper into the story – has it been an easy path overall, and if not, what were the challenges you’ve had to overcome?
It hasn’t always been a smooth road. When I was first diagnosed with Lupus the diagnosing doctor told me that I only had less than a few years to live. Well, past ten years later, I continue my journey hoping to inspire those who know me. I am also inspired by my cousin, Nigel. Before his passing in 2020, he had been diagnosed with lupus for over 33 years now. As a male diagnosed with Lupus, he experiences a lot of his trials unbeknownst to many because men are still considered a rarity when it comes to this mysterious illness. Although I continue to struggle with this unpredicted disease, I am fortunate to use my best days to help others as best I can. I have now been diagnosed with lupus for 29 years.
Can you tell our readers more about what you do and what you think sets you apart from others?
I’ve always had a passion for serving and teaching others because I am inspired by those I teach. I learn so much from helping others. I like to say that I specialize in empowerment. My flagship company, The Lupus Liar, allows me to educate, advocate and raise awareness about lupus as a highly sought-after speaker, critically acclaimed author, presenter, and trainer. I am devoted to helping others face life with an open mind, heart, and spirit. Readers can learn more about current works within the lupus community at Facebook.com/TheLupusLiar. Access to videos, clips, pictures, and articles are also available on my other social media channels like Instagram, YouTube, and Twitter. If you prefer to listen, you can subscribe to my podcast at iTunes and Spotify. You can access all channels through my website www.TheLupusLiar.com. I am blessed to have published a book titled, “Diary of a Mad Lupus Patient” that was an Amazon Bestseller. “Diary of a Mad Lupus Patient” is a book that chronicles the first few years of my life after diagnosis. It provides insight to the sporadic doctor appointments, mental and physical stress, and confusion that Lupus brings into your life. It started from me taking short notes about how I felt because, at the time, my diagnosing doctor didn’t feel that I was clear enough about my pain levels and struggle with my symptoms.
Currently, I am a volunteer lupus support group facilitator for the Lupus Foundation of America, a lupus chat content producer for Lupus Columbia SC, a committee member on the Arthritis Advisory Committee (AAC) of the U.S. Food and Drug Administration, and a member of the All of Us Research Advisory Committee. All of these volunteer positions allow me to help lend a voice to patients that may not be able to speak for themselves and help with sharing awareness of health disparities.
How can people work with you, collaborate with you, or support you?
The charity division of The Lupus Liar is the volunteer part of the organization. The volunteer priorities are based with Lupus Columbia SC, a registered charity in South Carolina. In general, all activities, volunteer-based work, support calls, and support group meetings are done to serve those in need that are diagnosed with Lupus. We can never have enough support when it comes to helping those in need. Lupus is such a devastating and confusing illness that many people don’t understand how to aid others in managing the disease. I encourage others to spread the word to family members and friends that there is support. And if you are diagnosed with lupus reach out the Facebook.com/SCLupusEvents page to see the events and support groups happening all across the state.
Contact Info:
- Email: thelupusliar@gmail.com
- Website: www.thelupusliar.com
- Instagram: http://www.instagram.com/thelupusliar
- Facebook: http://www.facebook.com/thelupusliar
- Twitter: http://www.twitter.com/thelupusliar
- Youtube: https://www.youtube.com/c/thelupusliar
- Other: https://linktr.ee/thelupusliar
