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More of the story: Miss Mississippi contestant Kennitra Thompson fought for her life against Stevens Johnson Syndrome

kennitrathompsonWhen Kennitra Thompson was 6, she told her mother she wanted to become Miss America. The determined little girl convinced Patricia Thompson to purchase a few blank VHS tapes to record the annual pageant, and she repeatedly watched the videos, studying the winners and learning to emulate Miss Americas like Heather Whiteston (1995), Angela Perez Baraquio (2000) and Erika Dunlap (2004).

At 13, she entered and won her first real pageant, Miss Junior Teen Jackson as number 135 out of more than 200 contestants. Other pageant wins followed. Then, Thompson was crowned Miss Metro Jackson and got to compete in the Miss Mississippi Pageant for the first time last year, bringing her a step closer to the Miss America crown.

This year, she’ll return to Miss Mississippi as Miss Rankin County Southwest, but a lot has changed for Thompson in the last few months. When she walks on the stage wearing a swimsuit, audience members may notice that her body is blemished with scars or “warrior wounds” from the life-threatening illness she recently battled. Kennitra Thompson is a survivor of Stevens Johnson Syndrome, a rare and often deadly disorder in which your skin and mucous membranes severely react to a medication or infection.

The beginning

After experiencing some of life’s ups and downs, Thompson’s doctor prescribed Lamictal, a medication sometimes used to treat seizures. But after two weeks, she began to experience symptoms that seemed like a common cold with fever and a sore throat. Her face began to swell, and by March 15, she decided to seek medical help, visiting two different facilities with physicians who told her she was either experiencing an allergic reaction or a viral infection.

When a rash broke out on her arm and began to spread, Thompson discontinued the medication and visited the University of Mississippi Medical Center with her own self-diagnosis.

“I had Googled my medication, and Stevens Johnson Syndrome popped up,” she said. “I read the symptoms, and I was like, ‘Oh my goodness. This is it.’ Around that time, I was breaking out in lacerations on my hands and feet.”

Doctors told Thompson not to jump to conclusions, but admitted her to the hospital and treated her cautiously. After two days, the illness began to take over her body.

“The doctors were in full isolation,” she said. “They were fully covered to their eyeballs. Dr. Julie Wyatt, my dermatologist, was the first doctor to touch me. She got in the bed with me and was teary-eyed, which was scary to me because doctors tell patients every day whether they are going to make it or not make it with a poker face.

“She told me I had Stevens Johnson Syndrome and most people don’t make it. She said it was going to get a lot worse before it got better, but I was a fighter and not to give up. She told me to pray.”

With her face and body swollen three sizes larger than her normal 115-pound, 4-foot-9-inch frame, Thompson’s airways began to close and heart rate dropped. Doctors performed a tracheal intubation and induced a coma for two and a half weeks, hoping to slow the progression of the illness.

Thompson flatlined and was put on life support. More lacerations formed on her body, and her parents were told that if the illness continued to burn her organs and skin, she would be airlifted to a Georgia burn unit. She was placed in intensive care.

“My mom and dad had called to make final arrangements,” she said, “because with SJS, there is nothing you can do.”

Brittany Duncan, her best friend of 14 years, left chiropractic school in New York to sit by Thompson’s bedside, unsure whether she would make it.

“The day before I was about to be airlifted, the disease just stopped,” said Thompson. “It didn’t spread anymore.”

After more than two weeks in a coma, Thompson woke up.

“The first thing I wanted to do was yell ‘Mom,’ but I couldn’t because I had tubes in my throat, and my mouth was held open,” she said. “I began to weep, and that’s when I looked down and saw my body covered in burn spots. I was horrified. I couldn’t talk. I couldn’t move. I couldn’t breathe.”

She was later taken off machines and began to breathe on her own. Doctors placed her on a medication called Cyclosporin, an immunosuppressant often used in organ transplantation to prevent rejection, but she began to experience kidney failure.

“It was kind of like you fix one problem, and it creates another,” she said. “My lips were so sensitive to touch, my skin would literally almost fall off. It was excruciating pain. I stayed heavily sedated.”

Thompson’s parents made sure that their beauty queen did not have access to a mirror. “I was not allowed to see myself,” she said. “They covered the mirrors in my room. When I did finally see myself, it was a very traumatic experience because I didn’t look like me. I was unidentifiable.”

A childhood dream

“I can still see that little 6-year-old girl sitting down there in that floor watching all the beauty pageants, gymnastics, synchronized swimming – she would watch anything technical,” said mom Patricia Thompson. “I put her in a dance class, and they swore she had training. I said, ‘No, she just watches it on TV.”

Thompson said her daughter has always been determined, even when it comes to faith. At 5, she told her she was ready to be baptized. “I said, ‘Let’s set up an appointment with the pastor and let him explain baptisms.’ She didn’t wait on me. She went to the pastor herself and told him that she believed in her heart that Jesus died for her sins, rose on the third day, and she was saved.

“She was always driven about things that she wanted. That’s why I put her in ballet in the fourth grade. She was a natural. Looking at my finances, I knew I couldn’t afford Ballet Magnificat!, but she was an honor student and such a great dancer at JPS, she won a scholarship for the Idyllwild Arts Academy High School and Summer Program in California.”

Kennitra first received the offer at age 15, but her parents did not let her accept it until her 11th grade year of high school when she spent a year at the performing arts boarding school on a $53,000 scholarship. She was also a dancer with “The RAT Pack” or Reject All Tobacco campaign, a gig that allowed her to earn money for college. But when she became ill, she lost the ability to walk, much less dance.

“I did not want to scare her because I was scared out of my wits,” said Patricia Thompson. “I didn’t sleep because I didn’t want her to stop breathing and not hear her. For three weeks, I didn’t leave her side. I don’t know where I found the strength, but I stayed up all night with her every night. I wanted to be there every waking moment to find out how she was doing.”

“It was devastating and horrifying, because you know how beautiful she was,” Patricia said. “There was nothing I could do. I kept her mouth greased through the night so she didn’t dry out, and tried to make her as comfortable as possible. In my spirit, I knew she was coming up out of there.”

Thompson’s family that includes siblings Lt. Jarrett Taylor, 38, and Detective Jerrick Taylor, 37, of the Jackson Police Department, and baby sister Joyniesha Thompson, 15, prayed for Kennitra’s recovery.

The experience taught Patricia to have strength for her daughter.

“I’ve learned that no matter what your child goes through, you’ve got to be strong and not let them see the fear, because they look for Mama, and if you break down, you’ve ended it for them,” she said. “We never said anything negative because we didn’t want any negative energy flowing anywhere. Kennitra is used to me fixing everything, but Mama could not fix that.”

She describes Kennitra as a go-getter and fighter and credits her years of dance with helping her survive SJS.

“Being a dancer helped her because she was fit,” she said. “If you’re weak, it will take you over. She was 115 pounds. When she came home, she was 88. She had to relearn to walk.”

A slow recovery

Now, only a few months after being released from the hospital in April, Kennitra Thompson is still gaining strength and trying to recover from SJS. She has a long way to go, but has come far from the depths of her illness and plans, once again, to compete in the Miss Mississippi Pageant July 10-13.

She worries about how her body will look to other contestants. She has returned to dance, but beats herself up when her technique is off. Getting in a swimsuit will take courage because of the scars that cover her body, and she has questioned whether or not she should compete. But Patricia has encouraged her.

“I said, ‘It seems to me that God has designed for you to do it this way,’” Patricia said. “’I’m just going to trust in him, and I think you should do it because you’ve said since you were 6 that you wanted to be Miss America.’ We are hoping that the judges can see through the spots and see the person competing.”

Thompson said her blemishes give her confidence, yet also make her feel insecure.

“Swimsuit is the competition that is really going to be liberating for me because I’ve overcome so much,” she said. “I hope the judges will see it was out of my control. I knew I had to do the pageant when people realized I survived. I got a plethora of messages saying ‘You don’t know the message you are sending about inner beauty.’”

At 23, this is Thompson’s last year of eligibility for Miss Mississippi. Her life has become her platform. She wants to educate the public about SJS, an often rare and fatal illness that doctors don’t know much about.

“We have to do research,” she said. “People are losing their lives. I’m in the process of writing a letter to the governor and asking him to declare August SJS month.”

She has also created a Facebook page where she communicates with other living survivors. “Facebook has really been my connection to the world,” she said. “I put a picture up of what I looked like with SJS, and I had over 80,000 likes.”

Her Internet work has also made her realize that, in comparison to many other SJS survivors, her case was horrible, but mild.

“Some had their skin completely burn off,” she said. “I only experienced severe burnouts with my eyes and my mouth. Most SJS survivors are left blind. I have extreme eye sensitivty. We are human vampires,” she laughed. “We can’t be in direct sunlight.”

Because many of her organs were affected, Thompson has a team of doctors.

“For the majority of them, I’m their first patient with SJS, and I’m two of their first surviving ones,” she said, adding that SJS can result from taking any type of medication, prescribed or over the counter. “People need to know they are at risk of this deadly disease.”  

More about SJS

According to the Stephens Johnson Syndrome Foundation, SJS was first discovered in 1922 by pediatricians A. M. Stevens and F.C. Johnson after diagnosing a child with severe ocular and oral problems following a drug reaction.

Julie Wyatt, Thompson’s dermatologist with UMMC, said the incidence of this rare reaction is thought to be 0.8 per million people.

“At the university this year, I’ve seen three cases of Stevens Johnson which seems to fit that number if we have a bit over three million people in the state of Mississippi,” she said. “Of course, there may be cases we as dermatologists were not involved in.”

Wyatt said the disease is very similar to a more fatal illness called Toxic Epidermal Necrolysis. The mortality rate for Stevens Johnson is 5 percent and, at the most 15 percent, but for Toxic Epidermal Necrolysis it is 50 percent.

“They are considered to be the same diseases on different ends of a spectrum only differing in the amount of your skin surface that is involved,” she said. “You don’t know which type people will have at the beginning of symptoms.”

Wyatt said the key to a good outcome is recognizing the reaction early and stopping the drug.

“What makes this difficult is that other symptoms that go along with the skin changes are just like the common cold – sore throat, cough, fever, runny nose, headache and fatigue,” she said. “In children, it’s more likely infection causing it; in adults more likely medications.”

Wyatt said there is no way to predict who will develop this reaction.

“Hopefully, one day, we will pinpoint the “factor” putting people at risk for it and avoid certain medications in our at risk patients,” she said.

Dr. Robert T. Brodell, professor and chair of the Dermatology Department at UMMC, said SJS is a hypersensitivity or allergic reaction to an infection or drug that leads to a reaction in the skin and mucous membranes, causing a tender rash and sometimes blistering.

“The lesions on the arms and legs also commonly involve the palm,” he said. “Sometimes the lesions look like a bulls-eye target with rings around a central clear area. The lesions in the mouth can be so sore that the patients do not want to eat or drink.”

Complications can include permanent blindness, dry-eye syndrome, photophobia, lung damage, chronic obstructive pulmonary disease, asthma, permanent loss of nail beds, scarring of the esophagus and other mucous membranes, arthritis and chronic fatigue syndrome. Many patient’s pores scar shut, causing them to retain heat.

No one really understands what causes SJS, but Brodell said it’s possible that what starts as an attack on something foreign leads to an attack on “self.”

“It is very important to stop medications that cause this, but there is already so much inflammation in the skin that it takes a long time to heal,” he said.

Sulfa antibiotics are the most common drugs that trigger SJS, Brodell said, but many others can. The SJS Foundation reports that the most commonly implicated drugs are anti-convulsants, antibiotics (such as sulfa, penicillin and cephalosporin) and ant-inflammatory medications.

Though SJS afflicts people of all ages, many victims are children. More female cases have been reported than male, however anyone can experience it.

Recognition of the early symptoms of SJS and prompt medical attention are the best ways of minimizing the effects of the illness. Brodell said if you have an illness or infection and begin to break out in a widespread rash with sores through your mouth, see your primary care doctor or a dermatologist. A biopsy can confirm the diagnosis. He said the hospital sees several cases each month from Mississippi.

“Most cases of Stevens Johnson are not fatal, though they cause a lot of suffering,” he said. “We have no idea why this strikes certain individuals other than the initiating infection or drug.”

The SJS Foundation said adverse drug reactions account for approximately 150,000 deaths per year in the U.S. alone, making drug reactions the fourth leading cause of death in the United States. SJS is one of the most debilitating recognized.

The foundation reports less than one percent of drug reactions are reported to the FDA, because there is no mandatory reporting system in effect for post-marketing adverse drug reactions.

Losing and finding herself

“It’s almost as bad as losing a family member because you are losing yourself,” Thompson said. “I still experience discomfort almost every day. It’s like playing a waiting game. You never know what you’re going to get. Everything is just going to take time.”

Thompson said she never thought she won past pageants because she was the most beautiful girl.

“I think I won because I was the girl who embraced her humanistic qualities,” she said. “I never prided myself on having the perfect lipstick, perfect dress. I just always knew that my personality and my resilience took me a long way. When I won, I remember thinking that the judges didn’t go for the superficial idea of what beauty is, and I’m hoping that’s what they do this year.”

Coming close to death makes you appreciate life much more, she said. “I’ve done things most 23-year-olds haven’t had the privilege of doing,” she said. “But I was never living in the moment. I was just going through it looking for the next big thing. One of the best things I’ve learned as a SJS survivor – we are so appreciative of every breath we take. The things I’ve lived through can’t be practiced or taught.”

Thompson said she’s excited and nervous about the pageant.

“I’m happy to be the driving force for so many young ladies who struggle with insecurities,” she said. “They have dared me to put myself out there to be judged against other girls who some consider close to perfect.

“I’m doing it for every girl who’s 400 pounds and wishes she was the 110 pound woman inside. I’m doing it for the girls who have struggled with eating disorders, substance abuse, and the girl who has mental issues. I’m doing it for every girl who has made mistakes in her life and wants to be role model. I’m 4’9, so I’m doing it for the short girl.

“I’m doing it for me – the new person I am because of SJS. I want to represent the real women out there, not just picture perfect glammed-up Barbies.”

–LaReeca Rucker, The Clarion-Ledger

Got a comment? E-mail me at endyanna@earthlink.com or Tweet me at @lareecarucker.

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