Today we’d like to introduce you to Andre Williams.
Hi Andre, can you start by introducing yourself? We’d love to learn more about how you got to where you are today?
Growing up, I thought I had everything all figured out. I had my future planned out, auditions I wanted to go out for, just a lot of life goals that I was looking forward to, but in 2017 everything I thought I knew and everything that I had planned for myself changed. After starting a new medication, I got sick. Like I thought I had the flu kind of sick. I ended up being admitted to the hospital and practically overnight, a rash that I had noticed before going to the hospital just blossomed. I found out I had Steven Johnson Syndrome, but to my surprise, I had the more severe form, which is called Toxic Epidermal Necrolysis (TEN). I was diagnosed just a few days shy of my brother’s birthday. I would’ve never thought this would happen to me, nor did I want this to be the birthday gift I would have to show my brother.
My body started going through the sloughing stages and I quickly found myself cocooned in bandages. There was not a mirror in my hospital room low enough for me to be able to see myself, but I finally asked for my cellphone so that I could video call my brother Ontario. You can only imagine the hurt I felt when I finally saw how my body completely changed in a matter of hours. I had to stay strong for when I finally got in touch with my brother because it was his birthday and I really didn’t want him to see how broken I was. Maybe in hindsight, it would’ve been best for me to just text him, but I’d been avoiding his calls and he knew something was wrong. When I finally got in touch with him, he was heartbroken at the sight of me but I spoke to him briefly before he handed his phone to our sister Michaela. Michaela was so calm, which calmed me down. I had such a great support system during my hospitalization. My mom Janice, my dad Andre, and my aunt Olivia were there every single day to learn as much as possible about this syndrome.
What I thought would be something I would get over in a few days quickly turned into my new norm. My world was so turned upside down and I found myself questioning what my new purpose for wanting to continue on with this thing called LIFE was going to be! I cried and cried.
My brother Ontario finally got to come to see me in person, and as soon as he saw me, there was a shift in everything. He made me laugh, which made me forget (at least temporarily) how much I was hurting, and he made me feel like myself. Ontario truly gave me a reason to want to continue on by making me remember that I’m still the same person I had always been. We talked and laughed so hard that people were coming into my room saying it sounded like we were having a party!
Today, I’m grateful to say that I’ve mostly recovered and have found a way to turn my experience around for good. Last year, August was declared Stevens Johnson Awareness Month in my hometown of Milledgeville, Georgia. I’m able to share my story with my community to bring awareness to this syndrome. On top of that, I start planning fun events for the community weeks in advance so that we can spend the entire month educating people about SJS in an engaging way. My hope moving forward is that we’ll be able to take SJS Awareness Month and branch off to more cities in Georgia in the near future.
Would you say it’s been a smooth road, and if not what are some of the biggest challenges you’ve faced along the way?
The road has been pretty tough, trying to rebuild confidence and also trying to find my purpose was a huge struggle for me. Never in a million years would anyone think that something that could possibly be fatal would happen to them. I had huge dreams and so much I wanted to do for my family, but life had other plans for me. Seeing myself for the first time while laying in that hospital bed broke me, it was a pain that I never felt before I thought life was ending for me in that moment because I could not believe the rapid changes my body had gone through within a twenty-four hour time period. Being able to share my story took a lot of souls searching and rebuilding of myself to get to the point where I felt comfortable to let the world into my life in hopes that my story could help someone else by encouraging them to keep fighting, no matter what life throws their way.
Can you tell our readers more about what you do and what you think sets you apart from others?
Now, I know my purpose and that is to spread awareness about SJS and even more importantly, to provide support for other SJS Survivors and burn survivors. Being able to give back to the JMS BURN CENTER has by far been one of my greatest accomplishments. Helping other burn survivors’ families with a place to live whether they’ve had SJS, Acid burn, Fire burn, etc is something that warms my heart. We have not all had the same experience, but we all need encouragement and motivation and to know that we are not alone. You never know what a person is going through and struggling with internally when their entire life has come to an abrupt and screeching halt. My family, and especially my brother, taught me early on that all people need is love and support – just someone to give them that little hope to want LIVE. That’s what I’m determined to give back to the SJS/burn victim community.
I have events every year in August to help raise money to donate to the burn center. My job is to educate as many people as possible about SJS/TEN, making sure everyone read about what they are putting in their bodies. Hopefully, I can find other people who would to join me in this journey of giving back for it is a heartbroken warming feeling knowing that you’re helping someone else despite your own struggles.
What quality or characteristic do you feel is most important to your success?
Being knowledgeable, staying strong-minded, and having the will to want to continue this journey of giving back and informing the world on SJS/ TEN.
Pricing:
- ANY DONATION AMOUNT
Contact Info:
- Instagram: surviving_sjs
- Other: https://burncenters.com/patient-stories/andrewilliams2021/
