|Battling Stevens-Johnson Syndrome and winning|
Guardian Lifestyles Editor
Published: Aug 21, 2012
At 10 years old, Latoya Hanna-Moxey knew one thing — her baby brother, Edmund Lewis Jr. was sick. And while her parents didn’t tell her or her older brother Tyrone, much about their baby brother’s ailment at the time, just based on how Edmund looked and how they were told to treat him, she said she realized that Edmund was fragile.
Edmund was diagnosed with Stevens-Johnson Syndrome (SJS), a potentially deadly skin disease that usually results from a drug reaction. In SJS as it is commonly called, the epidermis separates from the dermis. Although the causes are unknown, the main cases occur due to allergic reactions to medications, antibiotics, viral infections or reactions to the drugs. Infections leave the body in the worst way, beginning with a fever, sore throat, fatigue and then rapidly moves to ulcers, lesions and rashes that appear similar to third-degree burn scars all over the body. Loss of eyesight, and in some cases a person’s ability to walk happens. In many cases, it can result in death if not detected early.
Now 26 years old, and a constable on the Royal Bahamas Police Force, there is almost no evidence that Lewis at age four suffered with the skin disorder that his mother, Geraldine Lewis, 51, first thought was chicken pox, and had treated accordingly. Doctors plied him with antibiotics that made his skin condition worsen, before he was officially diagnosed with Stevens-Johnson Syndrome. Edmund’s parents were advised to seek medical treatment in the United States. By that time, he looked as if he had been burnt all over his body.
“You couldn’t hold him, you couldn’t do anything to him because he was just covered,” said his mother. “He looked like he was just burnt. To see your child standing on the table, the doctors holding him and every time they touched him, his skin would tear... every time I think about that, I can still see it — my son’s skin tearing apart. And it was very painful for him,” she said.
The mother was told her son’s Stevens-Johnson Syndrome happened due to an allergic reaction to penicillin, and that the more medication they gave him, the more the skin worsened and ripped, and they did not know it was happening because of the medication.
“After Edmund started receiving the correct treatment, six months after his diagnosis, his mother said they started seeing improvements in his skin.
“When he came home, I remember tears welling up in my eyes. He looked so different,” recalled the now 31-year-old Hanna-Moxey. “The way he looked was just completely different from the way he had looked.”
Edmund does not have vivid memories of that period in his life — he has to mostly go by what people told him — and his mother refused to keep any pictures of how he looked back then.
“I didn’t want to keep any pictures of that, but my family and I remember. It was an awful sight,” she said.
Today, Edmund is a perfectly normal young man, with clear skin. You would be hard-pressed to find any evidence on his person, that he had suffered a skin disorder that could have killed him — except for the medical ID bracelet on which is listed the drugs he is allergic to.
“I don’t remember too many things about it, but now I’m living a normal life,” said Edmund. “From my understanding, this kind of thing happens when you mix together too many different kinds of medications. I can remember getting these bumps that got bigger and bigger which turned into boils all over my entire body. I can remember my mom crying, then placing me in a hot tub and scrubbing my skin constantly. Physically, you don’t feel sick — you don’t feel weak or anything like that, but your skin... man — it would fall right off. The doctors would lift me out of the bed and when I looked back at the bed... the skin was in the bed,” he said.
Edmund said up to age 10 or 11 he had still shown signs of the disorder — his skin had a light, pinkish look.
Because of what he has been told and what he can recall, he is very careful of what medications he takes, because he said he does not want another bout with Stevens-Johnson Syndrome. While he does not remember much, what he does remember vividly is his mother and father getting extremely emotional, and his grandmother coming to the hospital to pray for him.
Now himself a parent to two-year-old daughter Elayna, Edmund had a recent scare after he noticed a rash on his daughter that fortunately cleared up. Knowing what he went through, he’s been extra vigilant with her, especially as doctors have told him that there is a possibility that she too could develop the disorder. He does not want that for her.
Both he and his mother urge parents to always take their children to seek medical attention if anything strange happens.
“Always check to be sure because you never know what it could be, and don’t be afraid to get a second opinion,” he said.
“When they see any infection, or any bump or rash, take the child to the doctor because sometimes the child can be allergic to medication, or it can be too strong,” said the mother. “And don’t wait too long. I waited very long — about a month because I was trying to treat it thinking it was chicken pox. And the doctor told me that Edmund had lost so much fluids that he could have died if we had waited much longer.”
Edmund’s result has been positive, but there’s one other young lady, Rayven Deveaux, who is in the throes of the battle with the disease. To date, Rayven has had a cornea transplant in one eye that has helped her to see a little in that eye, but is in need of another cornea transplant in the other eye. Rayven also has to receive medication for the next few years that is expensive and has an outstanding six-figure hospital bill. While Edmund’s older sister, Hanna-Moxey, is happy for her brother’s outcome, she’s doing what she can to now help Rayven. She recently held a “The Clothes off My Back Closet Raid” from which all proceeds went to Rayven’s benefit.
And Edmund, who has met Rayven, the only other person he personally knows with the skin disorder, said when he met her, he spoke comforting words to her to let her know that she can live through Stevens-Johnson Syndrome, that all isn’t lost, and to keep her head up.
Looking back, Hanna-Moxey said she did not understand the serious nature of her brother’s illness at the time because their parents kept it from the two other siblings. At the time, she didn’t even know there was a possibility that he could have died. She said they are blessed and lucky that their parents were able to get Edmund diagnosed in time.
Causes, incidence, and risk factors
General ill feeling
Itching of the skin
Multiple skin lesions that:
Start quickly and may return
May appear as a nodule, papule or macule and may look like hives
Central sore surrounded by pale red rings, also called a "target", "iris" or "bulls-eye"
May have vesicles and blisters of various sizes (bullae)
Located on the upper body, legs, arms, palms, hands or feet
May involve the face or lips
Usually are even on both sides (symmetrical)
Other symptoms that may occur with this disease:
Eye burning, itching and discharge
Controlling the illness that is causing the condition
Treating the symptoms
Stop taking any suspected medications, with your doctor's approval
Treatment of mild symptoms may include:
Medications such as antihistamines to control itching
Moist compresses applied to the skin
Oral antiviral medication if it is caused by herpes simplex
Over-the-counter medications (such as acetaminophen) to reduce fever and discomfort
Topical anesthetics (especially for mouth lesions) to ease discomfort that interferes with eating and drinking
Treatment of severe symptoms may include:
Antibiotics to control any skin infections
Corticosteroids to control inflammation
Hospitalization and treatment in an intensive care or burn care unit for severe cases, Stevens-Johnson syndrome, and toxic epidermal necrolysis
Intravenous immunoglobulins (IVIG) to stop the disease process
Practicing good hygiene and staying away from other people may help prevent secondary infections.
Skin grafting may be helpful in cases in which large areas of the body are affected.
Mild forms of erythema multiforme usually get better in two to six weeks, but they may return. More severe forms may be difficult to treat. Stevens-Johnson Syndrome and toxic epidermal necrolysis have high death rates.
Body-wide infection, sepsis
Loss of body fluids, shock
Occasionally, lesions on internal organs causing:
Heart inflammation (myocarditis)
Lung inflammation (pneumonitis)
Kidney inflammation (nephritis)
Liver inflammation (hepatitis)
Permanent skin damage and scarring
Skin infection (cellulitis)
Source: PubMed Health