Unstoppable: How Alexis Lott Has Redefined Success While Navigating Society With Sickle Cell Disease
I wish people understood that SCD is a genetic disorder and that it is not only seen in African Americans. Anyone can carry or develop the disease as long as the SCD gene is present, no matter what their skin color is.
As a part of our “Unstoppable” series, I had the pleasure of interviewing Alexis Lott.
Alexis Lott is a marketing professional who lives in Columbus, Georgia with her husband. She was diagnosed with sickle cell disease as a newborn and began her work in advocacy as a young woman after experiencing multiple complications from the disease that required lifesaving blood transfusions. She is passionate about sharing her story to build awareness of the impact sickle cell disease has on the lives of patients and their families.
Thank you so much for doing this with us! It is really an honor. Our readers would love to get to know you a bit better. Can you share your “backstory” with us?
I have been living with sickle cell disease (SCD) since I was born. I currently I serve my world by advocating for others affected by the condition, building personal brands through my marketing business. I began sharing my story to build awareness of SCD when I was young, but my serious work in advocacy began in 2020 at the beginning of the COVID-19 pandemic when I was hospitalized due to sickle cell crisis. I needed a blood transfusion but was told by my doctors that there was no blood available to me because of a severe blood donor shortage. I began to see the urgent need for more blood donors of African American descent and for the public to be more educated about SCD in general. I decided to use my voice and experiences to help make SCD a well-known and understood illness.
Do you feel comfortable sharing with us the story surrounding how you became disabled or became ill? What mental shift did you make to not let that “stop you”?
I was diagnosed with SCD when I was six weeks old during a routine newborn screening. The disease is a genetic disorder that is characterized by the red blood cells forming in a sickle shape instead of round. As a result, the cells aren’t able to efficiently transport oxygen throughout the body. People with SCD are at risk of experiencing multiple potentially life-threatening complications including infections, anemia, severe pain crises and organ damage. The condition is most commonly seen in people of African descent but is also prevalent among the Hispanic, Asian, Mediterranean and Middle Eastern populations.
When my mother was pregnant with me, my parents knew that my father carried the gene for SCD but my mother’s doctors neglected to tell her that she was also a carrier. My parents did not know that I was at risk of having the disease.
I had my first SCD-related pain crisis at nine months old and I have experienced countless disruptive symptoms and complications since then, but I am proud of the life I’ve built despite these interruptions. I give a lot of credit to my mother, who reinforced my belief that I can do anything that anyone else can do. She never treated me like I was different or disabled. When I experienced physical limitations or health complications, we made room for SCD in our lives but she taught me never to use my diagnosis as a crutch or excuse. To this day, I know that while SCD can slow me down at times, it certainly does not control my life. I have SCD, SCD does not have me.
Can you tell our readers about the accomplishments you have been able to make despite your disability or illness?
I’m very proud of what I’ve accomplished so far in the personal and professional areas of my life. I graduated from Columbus State University with a bachelor’s degree in mass communication and I’m currently working on getting my master’s degree. I have been successfully running my own marketing company since 2014 and recently also became a full-time employee with my church.
I recently celebrated my first wedding anniversary with my husband. I’ve also been able to travel throughout the US and internationally, which is a huge accomplishment for anyone living with a chronic illness. I’m a very busy person and I enjoy a full life.
What advice would you give to other people who have disabilities or limitations?
I recommend that others living with physical limitations remember that their mindset is everything. Having a disability or limitation does not make you a victim and it’s important to stay away from the mentality that the world owes you a leg up because you face unique challenges in life. You are just as capable of achieving your goals as anyone else. With that in mind, it’s also important to remember to ask for help when its needed and invite family and friends into your circle so that those closest to you understand the emotional and physical pain you may be dealing with.
None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are?
I’m lucky to be surrounded by an extremely supportive family and group of friends but one person who comes to mind is my husband. Before we started dating, we had a strong platonic friendship for a long time. I was once speaking at a youth event at a local church and began experiencing a sickle cell crisis. I was having trouble breathing and really struggling to get through the event. He saw that I wasn’t feeling well and immediately drove me to the hospital, sat with me in the emergency room and made sure my parents had been called. I knew he was “the one” after that day. He has become a pillar of stability when I face health challenges and he plays a huge role in the management of my disease.
How have you used your success to bring goodness to the world?
It’s sometimes hard for me to consider myself to be successful because I haven’t achieved fame. I consider myself to be a regular person but for sickle cell warriors, there are many “regular” achievements that are extremely difficult to reach. I’m proud to have graduated from college and established a career that allows me to balance my professional life with the work needed to maintain my health. That’s success for many people living with SCD.
My success in SCD advocacy has come from sharing my story. I’ve written two books about my journey with the disease, and I make it a point to use my voice so I can be an inspiration to others affected by the disease as well as educate those who may not have even heard of it. The books go into detail about the emotional impact of having a chronic health issue. I wrote about the episodes of depression and uncertainty I’ve faced when my life felt muddy. It was important me to share my story regardless of whether or not my life looked perfect. I am committed to using my voice to show others that it is possible to heal, no matter how challenging the circumstances are.
Can you share “5 things I wish people understood or knew about people with physical limitations” and why.
I wish people understood that SCD is a genetic disorder and that it is not only seen in African Americans. Anyone can carry or develop the disease as long as the SCD gene is present, no matter what their skin color is.
Blood donation is one of the safest ways that sickle cell warriors can battle the disease and manage their symptoms. I hope that average people remember how important donating blood is. People often feel helpless and look for ways to help others and give back to their community. Blood donation is one of the easiest ways to become a hero.
SCD in the United States is a social and racial justice issue in addition to being a healthcare issue. Conversations about healthcare and racial justice don’t always go together so SCD can sometimes slide under the radar when important policy decisions are being made. There is a need for more people of color to be represented in these discussions. I would love to see times set aside for people of color to speak specifically about chronic illnesses and racial justice.
It is extremely important to listen to public health officials. When pandemics like COVID-19 occur, taking protective measures to slow the spread of disease has a broad impact. When emergency rooms are full of COVID patients, people with chronic diseases and other life-threatening conditions often face challenges receiving the care they need in an appropriate time frame. A spike in COVID cases sends ripples through the entire healthcare system.
There is no cure for SCD. Many of the therapies being discussed in the SCD community and in the media seem (and can be) very exciting. We see the word “cure” thrown around a lot, especially during discussions about CRISPR and other genetic engineering technologies. But even these treatment options aren’t ideal and have life-changing implications because they require the use of chemotherapy drugs to work and involve wiping out the entire immune system. I have asked my doctors if I might be a candidate for CRISPR but I was told I should not go this route because I would likely become infertile after being treated with chemotherapy drugs. While these scientific developments are exciting, it’s important that research continues so that the SCD community has access to safe and effective treatments that are widely accessible and preserve our quality of life.
Can you please give us your favorite “Life Lesson Quote”?
“No one has peace when they aren’t happy with who they are.”
Dr. Matthew Stevenson III
We are very blessed that some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see this 🙂
T.D. Jakes. He is one of my favorite faith-based influencers and preachers.
Thank you for these fantastic insights. We greatly appreciate the time you spent on this.
Unstoppable: How Alexis Lott Has Redefined Success While Navigating Society With Sickle Cell… was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.