About 1.5 million Americans are diagnosed with a form of lupus each year according to the Lupus Foundation of America. Of that total, about 90 percent of the diagnoses are women.
Despite such a high number of diagnoses each year, many people are unaware of what lupus really is and just how much it can change the lives of those who are diagnosed, especially since the damage and pain caused by the disease are primarily internal for most people.
One person who has had her life completely changed by lupus is Emery Styron-Lee. While lupus is usually a genetic disease, her lupus had remained dormant until she became sick with spinal meningitis. That initial sickness changed everything for her in more ways than one.
“I got spinal meningitis two months before my fourteenth birthday. I got spinal meningitis from something as small as drinking from a water fountain at school or sharing chapstick or a drink with someone. The biggest thing you usually feel from it is just a bad headache,” explained Emery. “Spinal meningitis changed my whole life. I went from cheerleading, playing softball, playing soccer, and being a normal 14 year old girl to being deaf in both ears for almost a year and a half. I still can’t hear anything at all out of my left ear, and they did surgery on my right ear so that I can hear a little bit. When you get spinal meningitis, it goes straight up to your brain and attacks certain things, such as your nerve endings. My mom and I both speak sign language fluently and will still speak in sign language sometimes.”
Within three weeks of her contracting the spinal meningitis, Emery’s mom fought to make sure doctors could figure out what was wrong with Emery because she knew that something else was going on. That was when they learned that the meningitis had activated the form of lupus known as systemic lupus, which attacks major organs.
“They said that I had lupus before, but it was not supposed to be active. The spinal meningitis kicked it into an active thing. Now, I’m the first one in my family to have it. No other relatives have it,” expressed Emery. “There is no prescription that is going to stop it or slow it down. You can take medicine for lupus, but it isn’t to stop it or make it get better. The medicines just help manage the symptoms. I have to see a dietician each week because of malnutrition and dehydration.”
When she first found out about the lupus, she did pretty well and was able to overcome things quickly. By the time she turned 18, she had to undergo her first surgery to correct a problem the lupus was causing.
“I did okay with it for a while because I was so young that I was bouncing back from it better, but then I had a really bad flare up when I was around 17. They had to put a gastric neurostimulator in. It’s a pacemaker for the stomach and shocks the lining of the stomach to help it move food,” recalled Emery. “They put it in right when I turned 18, and it’s a huge surgery. It wasn’t approved for someone my age, so I had to do a test trial where they biopsies. It was either try that or go straight to a feeding tube. I was only 18, so if there was another option then I definitely didn’t want a feeding tube. It worked really well for a couple of years, but it’s gotten to the point that they can’t turn it up anymore.”
Now, she is 27 and has had another major problem caused by the lupus. In fact, she had to undergo an emergency surgery because of the damage the lupus had caused.
“My last day of work was June 30. I worked for the Jasper County Sheriff’s Office full time. I was at work, and my boss was there with me. I told her that I didn’t feel well and that my stomach really hurt. She asked if it was the regular stuff because I get sick every day. I told her that it was different and really hurt. She told me to go ahead and head home. I called my partner, and she said she would get off work so we could figure it out,” remembered Emery. “I didn’t even make it in the house. I blacked out on the steps, busted my mouth open, and got a black eye. Thankfully, one of the deputies was following me home and saw everything that happened, and they got an ambulance out there. The lupus had attacked my gallbladder and made it four times the size that it should have been. It was full of infection that was growing everywhere. They had to remove my gallbladder and part of my bile duct. While they were in there, they looked at the inside lining of my stomach, and it’s starting to turn grey, which means the organ itself is starting to die. The pacemaker is no longer an option.”
Learning that she would have to take another step because the pacemaker is no longer working isn’t the only issue that Emery has faced since the surgery. She suffered major complications after the surgery from what they had to do in order to maneuver around the pacemaker and safely remove the gallbladder.
“The gallbladder surgery was a lot because they had to put more gas in my belly than they would a normal person because they had to maneuver around my pacemaker box. The size of my gallbladder with all of the infection in it made the surgery take a really long time. I didn’t do well under the anesthesia, but they told me it would be okay since my mom is a nurse and was going to go home with me. They told me to go home and get some rest,” informed Emery. “We didn’t make it to the house. We had to pull over and stop in Stringer, which is where I lived and worked at the sheriff’s office, because I couldn’t breathe. I stopped breathing twice. Thankfully, my mom used to be an RN, so she got me back twice. The lady at the dollar store we pulled into was throwing water on me and everything, and then I coded in the ambulance on the way back to South Central. They said the air they put in my belly had come up through the sides of my neck and had formed air pockets squishing my trachea, and they’re still in there. Then, I didn’t heal well from the surgery. I got a bad infection in one of my incisions in my belly, and they ended up having to remove part of my bellybutton because of it.”
Now that she’s recovering from those complications and other emergency room visits she has had since then, Emery is trying to work on the next steps. She knows that she is not able to have the pacemaker for her stomach anymore and is preparing for two different surgeries in the future that will help correct some of the problems she is having now.
“They have to remove the pacemaker box, and then I’ll have to recover from that. My intestines and bowels are now getting infection off of the stomach moving down into them. They will have to completely remove the pacemaker and sew the top and bottom of my stomach off,” explained Emery. “Then, I’ll have to get the J-tube, which is a permanent feeding tube. They’ll tie off my stomach, and it’ll go straight into my intestines.”
Unfortunately, her current health from the lupus has caused her to have to adjust to a different way of living and has negatively impacted her finances. She is no longer self-sufficient, which is difficult for her since she has been independent since she turned 19.
“I’ve lived on my own since I was 19. I’ve always been on my own and done things on my own, and now I’m back to living with my parents. My stepdad has Parkinson’s, and my mom isn’t in good health either, so they live off disability. My job in Jasper County completely cut off my insurance, so we’ve been having to pay out of pocket for everything from medications to co-pays to surgery fees. My parents don’t have that. My stepdad is going without his Parkinson medication just to make sure I get the stuff that I have to have because now I’m on an all liquid diet,” declared Emery. “I’m always exhausted. My mom helps me do everything: she helps me get a bath and wash my hair; if I have a doctor’s appointment, she gets me up and helps me get ready. I went from a daughter who is fully independent to fully dependent on her again. It’s been a lot to deal with. It’s been bad on my mom because she comes and checks on me every couple of hours because she’s terrified I’m going to stop breathing again. We do yard sales all the time, and I’ve sold most of what I own on Facebook to try and avoid getting money from my parents.”
Emery does everything she can to try and not be a financial or physical strain for her parents. Not only does she sell different belongings that she thinks she can do without, but she also tries to work a couple hours at a time for her part time job with dispatch in Clarke County. Her job serves a double purpose for her as it supplies her with a small income and helps her mental state by allowing her to do what she loves and help other people. Her coworkers are also very understanding of her condition and give her some support in what she’s going through, allowing her to feel more like a person instead of someone with a condition.
“I still work for Clarke County Dispatch part-time. I’ve worked there since 2016. I still go to work for a couple hours at a time. It’s for my mental health. It gets me out of the bed and away from just being the sick one,” stated Emery. “My boss, Jackie Matthews, and the other dispatchers have been so amazing. I can’t say enough how great and supportive they’ve been. Even when I was working in Jasper County full time, they would still check on me all the time. I’m grateful for the people I do have, but it has been a journey.”
Although she does work and do her best to contribute, the costs for treatment and the upcoming surgeries that she will need are more than she can handle on her own. In fact, Lupus Foundation of America estimates that each lupus patient loses about $50,000 annually in healthcare and lost productivity. With healthcare being so high, Emery will need a little assistance to get the procedures she needs done paid for.
Anyone who would like to donate to Emery and her family to help her with her medical journey can donate to one of the following places:
• Cashapp: $emis159
• Venmo: Emery-Styron-1
• Paypal: email@example.com
• P.O. Box 833, Stonewall, MS 39363