Antwan Winkfield’s earliest memories are shrouded in the stories his family told him. As a baby, he was often inconsolable, and his mother initially thought he was simply a “crybaby.” However, his persistent crying was a sign of something more serious.
It was his grandmother who first noticed something unusual about his spine while bathing him. Concerned, she took him to the doctor, where they discovered a neurofibroma pressing against his vertebrae, causing significant pain and early signs of scoliosis. This diagnosis marked the beginning of a long journey with Neurofibromatosis Type 1 with Plexiform Neurofibromas (NF1-PN), a genetic condition in which tumors grow along the nerves, which can cause pain, mobility issues, severe disfigurement and reduced quality of life. Antwan had his first surgery at just two years old, and this was the start of many medical challenges.
Growing up, Antwan’s family was his pillar of strength. When doctors predicted he wouldn’t live past eight years old, his family turned to their faith. His grandmother’s words of encouragement, telling him he was one of God’s soldiers and that faith would see him through, left a lasting impact. Antwan embraced this as a badge of honor, fueling his resilience and positive outlook on life. His family’s unwavering support and strong faith became the foundation of his perseverance.
“I’m really big on faith, and that’s what I’ve always lived with. Whenever I have to have surgery or go to the doctor, I just think, in my mind, ‘Hey, God’s got it, and He’s never going to give me anything that I can’t overcome.’ I’ve always lived with that mindset, and my family is big on their faith too,” Antwan shares.
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Navigating through school with a rare condition was not easy. Antwan grew up in an urban family with financial constraints, which initially made college seem unattainable. However, a high school instructor’s encouragement and belief in him sparked a determination to pursue higher education.
“I grew up in an urban family with a single mom for the most part. My stepfather was in and out of the house, and my biological father was in prison. I didn’t think I could go to college because I knew my mom couldn’t afford it. But I remember meeting a teacher who was a Junior ROTC instructor. He said, ‘If you want to go to college, don’t think about the money. Pray and believe it will happen.’ He instilled in me the belief that I could go to college regardless of my circumstances,” Antwan shares.
Despite facing severe health issues, including chronic lung disease and multiple hospitalizations, Antwan managed to persevere. He recalls a pivotal moment in college when he nearly dropped out due to health-related absences.
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“In my sophomore year, I got really sick. I was at a convention as a camp counselor and was excited because it was my first year getting to be a leader in discussion groups. Suddenly, I just collapsed out of nowhere. They told me to lie down for a bit, but in the middle of the night, they took me to the hospital, which saved my life. I found out that I had a severe infection, and later discovered I had restrictive lung disease due to some tumors pressing against my lungs,” Antwan adds.
Fortunately, a supportive advisor convinced him to speak with his professors, who were willing to accommodate his needs.
“She advised me not to drop out, saying, ‘Talk to your teachers and see who will work with you.’ Most of them did work with me, although I had to drop a couple of classes,” Antwan, who has his master’s degree, shares. “Despite these challenges, I was able to graduate, which was a blessing. I even got to dress up as the mascot, Baby Jay, a couple of times and travel to different places. It was a testament to pushing through adversity and advocating for myself.”
Self-advocacy has also become a crucial part of Antwan’s life as he’s gotten older and learned to work with what he has. Although he is currently living on a ventilator and has to travel five hours to see a specialist in St. Louis, he still maintains a full-time managerial position.
“Having respiratory issues just made me determined to take on my job. I live with my ventilator, and when I’m at work, I have a little part of my workstation where I keep it. I think it’s good for me to show that just because I’m on a breathing machine doesn’t mean I can’t work,” Antwan adds. “Being on the job, I can lead a team, I can contribute, and I can achieve things. Being part of support groups and learning to share my story has given me opportunities like this moment to share my story with more people. It’s about advocating for yourself and finding ways to get involved because you never know when your story can change someone’s life.”
Throughout his journey with NF1-PN, Antwan has continually proved that his medical challenges do not define his capabilities.
“Even at work, I get random people coming up to me, giving me the biggest hugs, and saying I’m so inspiring. Doctors come up to me and say, ‘You’re smart; keep doing what you’re doing.’ Respiratory therapists can’t believe that I’m on this machine, running a board, helping run the bar, and doing various tasks. They can’t believe it,” he says. “Once, I was in Walmart, and a woman broke down in tears. She said her niece or granddaughter was on a trach, and seeing me at the store by myself gave her hope that her granddaughter was going to be okay. Hearing things like that makes me feel like everything I go through is worth it. If my troubles and pain help someone else, it makes everything worth it. I would go through it all over again if it’s going to inspire other people.”
Antwan’s mindset has been a key factor in navigating life with NF1-PN. His mantra is not to allow adversity to determine his destiny. It is this philosophy that has guided him through 25 hospital admissions and 18 surgeries. His experience attending a public school, where he initially felt like a victim due to bullying, transformed into a source of strength when he decided to embrace life without worrying about others’ opinions.
“As long as I have breath in my lungs, I can move my feet, and I can get in and out of the house by myself, I will still do what I can. The first step is having the right mindset and attitude to decide that you still want to live a productive life and pursue your dreams and aspirations. Once you make that decision, your mind is clearer. You have to focus on the positive, on what you can control. I can’t control my lungs; I can’t make them better. But I can control my attitude and my outlook,” Antwan shares. “Luckily, I had that realization at a young age. Now, whatever life throws at me, I just take it because it’s not going to break my spirit. My adversity does not determine my destiny, and that’s my philosophy. I want to live as fully as possible. Some days are easier than others, but I’m still here. I thank God for the good days and for the bad days. When the bad days come, I rest up and do what I have to do. But when the good days come, you best believe I’m out and about, whether it’s going to the gym, hanging out with friends, or doing whatever I can do.”
Antwan’s journey with NF1-PN has inspired him to raise awareness about the condition and provide support to others. He actively participates in initiatives like SpringWorks Therapeutics’ education campaign and various community events.
He also launched his own brand, SMILS, during the pandemic. The brand reflects his philosophy of maintaining a positive outlook and overcoming adversity.
“I realized how serious everything was [during the pandemic] because of my lung condition and tumors. If you catch COVID, it can kill you. For the first time, I had to be still, and I started thinking about my brand and my philosophy. I want to build this brand to help spread a story of positivity and resilience, where smiling more is a way to overcome struggles. I want to create a curriculum to help teach people different ways to overcome adversity and live with it. You don’t have to be happy about it, but you can learn skills to prevent adversity from breaking you.
Each letter in my philosophy stands for a pillar:
- ‘S’ stands for Strength.
- ‘M’ stands for Mindset.
- ‘I’ stands for Inspiration.
- ‘L’ stands for Love yourself, especially when living with a rare illness.
- ‘E’ stands for Embrace your own definition of success, not comparing it to others.”
There are currently no FDA-approved therapies for adults with NF1-PN, but Antwan’s story is proof that you can live a fulfilling life with NF1-PN.
To learn more about the disease, Antwan recommends the following resources:
