My son was 2.5 years old when he was admitted to the Children’s Hospital on Nov 7th, 2009, in Winnipeg, MB Canada. I also had never heard of SJS. Today, it is all I think about.

The mother of young Liam refers to herself simply as Melanie. But she so identified with Avi Selk’s recent Dallas Morning News story about a rare skin condition known as Stevens Johnson Syndrome, or SJS, that she felt compelled to comment on the story.

My son was very ill. He was the first child they had ever had in that hospital that had needed to be incubated to save his airway, to keep him breathing,.. the first child that hospital had ever had in PICU (pediatric intensive care unit) fighting for his life.

SJS is a life-threatening condition that begins with a rash on the skin. The rash blisters over and the skin begins to peel off in sheets, exposing the body to infections. Blisters can form on the eyes and internal organs, leading to complications with the eyes, bowels and digestive system. In severe cases, the condition can be fatal.

While the cause of SJS is still baffling, most believe that it is caused by an allergic reaction to medication. As many as 2,000 drugs have been linked to SJS, most often antibiotics, anti-inflammatory drugs, and anti-seizure medications. The only drug found in Liam’s system at the time of his diagnosis was Children’s Motrin, a common over-the-counter medication that Liam had taken numerous times before.

My son was the picture of health. SJS stormed in our lives, it is forever in my mind and I am forever haunted, waiting for its return. Without knowing the ACTUAL trigger,.. I live in constant fear.

People need to know about SJS, doctors needs to know about SJS… ignorance is not bliss.

SOURCE: Stevens Johnson Syndrome › Mother says SJS awareness is a must: ‘Ignorance is not bliss’

Cripps has been sharing updates on his sister’s condition in his newspaper column. This latest update continues to show the family’s optimism for her full recovery. Her doctors say it could take six months for her body to heal completely.

“Skin continues to peel away from her body and the new layer is extremely sensitive,” Cripps writes. “She will work with a dermatologist on best procedures to expedite recovery. The precautions she takes with her new skin will be similar to how a mother cares for her newborn, especially with heat and the sun.”

Cripps gives credit to the hospital staff for taking good care of his sister. “I know a lot of people think the health care system is in crisis. All I can say is my sister received an amazing level of care, from initial prognosis of the SJS in Royal Victoria Hospital in Barrie to the specialized burn unit at Sunnybrook Hospital,” he writes.

Lisa deserves much credit too. Her strong will and positive spirit surely helped bring on a speedy recovery.

SOURCE: Stevens Johnson Syndrome › Canadian woman with SJS goes home from hospital

As a young child, Lisa contracted pneumonia and spent a month in the hospital. She grew up with an abusive stepmother and struggled through a difficult marriage. Despite the obstacles, she managed to raise two children and find a career in real estate. But last week, the young woman with an infectious personality, hit another road block. She was diagnosed with Stevens Johnson Syndrome (SJS), an adverse reaction to antibiotics prescribed to her following minor surgery.

SJS is a rare but life-threatening hypersensitivity disorder that presents with a rash on the skin. As the condition progresses, the rash blisters over and the skin begins to peel off in sheets. This causes great pain and makes the body prone to infection. Most patients are treated in burn units. The mucus membranes also can be affected, causing blisters to form in the mouth and on the eyes. Dehydration and ocular problems become serious side effects. Severe cases of SJS can be fatal.

More than 200 medications have been linked to SJS or its most severe form, toxic epidermal necrylosis (TEN), most commonly antibiotics, ibuprofen and anti-seizure medication. SJS and TEN doesn’t discriminate based on age or gender. The warnings on the medications’ label often go unnoticed. And the condition is so rare that it can be hard to diagnose.

Some organizations, such as the Stevens Johnson Syndrome Foundation seek to raise awareness and “provide information about adverse allergic drug reactions so a quick diagnosis can be made and the offending drug stopped as soon as possible.”

When Mark visited his sister Lisa, she was covered from head to toe with blisters and rashes. Despite her condition, she seems brave. “That’s why she’s my hero,” Mark says.

Mark Cripps is Managing Editor for the Dundas Star News, the Ontario, Canada newspaper where he shared the story of his sister.

SOURCE: Stevens Johnson Syndrome › Newspaper managing editor calls sister with SJS a hero

I thought that comment was odd. But a week later, my sinus infection had not improved. I took the prescription to my pharmacist. I told him that my doctor had told me to only fill the prescription if I felt I really needed it. I asked if there was any reason I should not take the med, given that I simply was not getting over my ailment. The pharmacist nodded and said Ketek was a powerful antibiotic and had some strong side effects. But if a week had passed since seeing my doctor and I was not on the mend, perhaps I should fill it.

I’m not one to react adversely to medicine. And I can usually ride out minor side effects, believing that if it has been prescribed for me, it’s working some sort of miracle. I started the drug and almost immediately after taking the medication I felt even sicker than before, with dizziness, headaches and an overall feverish feeling. I took a second dose the next day and the miserable symptoms returned. I realized then that it must be the Ketek and stopped taking it.

You may remember me telling you about Kim Oakes. She’s the remarkable woman who survived a painful battle with toxic epidermal necrolysis (TEN), the most severe form of Stevens Johnson Syndrome (SJS). SJS/TEN is a severe adverse reaction to medication in which the skin blisters and peels away. The eyes, mouth and other mucus membranes can also blister over causing serious complications and even death.

More than 200 drugs have been linked to SJS/TEN. Kim’s reaction was caused by a common antibiotic called Clavulin. She said she knew immediately after taking the first dose of Clavulin that something was wrong. The medication made her feel worse, not better.

The same happened with Hannah, the 14-year-old who had a serious bout with SJS that was linked to her bipolar medication trileptal. Hannah said the medication had made her physically ill for weeks before she broke out in painful rashes and blisters. She just didn’t realize it was the trileptal that was making her so ill.

Since writing about SJS, I have learned about the many medications that can cause SJS/TEN. And yes, Ketek is on the list. There have been publicized reports of SJS/TEN related to the antibiotic. Since my trial with Ketek, I have told my doctors not to prescribe it to me.

So, just a word of warning during these days when colds and flu are on the rise. Be aware of the medicines you are prescribed. Read up on the side effects and adverse reactions. And stay safe.

SOURCE: Stevens Johnson Syndrome › Beware of side effects from meds this season

Health Canada recently updated its report of adverse reactions to some of the more common herbal products, including Echinacea, ginko and St. John’s Wort. According to the report, some people have reported experiencing rashes after taking St. John’s Wort. St. John’s Wort is an herbal treatment for major depression and is available over the counter in the U.S.

Ginseng is another common herb readily available in the U.S. Ginseng is a stimulant taken orally to treat type II diabetes and sexual dysfunction in men. Ginseng also can be found in some popular energy drinks and foods. Studies show that ginseng has been linked to at least one occurrence of Stevens Johnson Syndrome (SJS), a severe adverse reaction to medication.

SJS usually begins with a fever and sore throat and progresses to rashes that cover the skin and mucous membranes. As the condition progresses, the rashes can blister over and cause the skin to fall off in sheets. The mouth and eyes also can blister, which can lead to dehydration, infection and serious eye problems and even blindness.

The International Journal of Pediatric Dentistry also reports that a 10-year-old Indian boy developed severe mouth and eye ulcers and was subsequently diagnosed with SJS after taking an “herbal medication of plant origin” prescribed by a traditional healer for treatment of a fever. According to the book, traditional therapy with herbal preparation (Ayurvedic medicine) is not uncommon in India.

Doctors advise those who experience symptoms of SJS to go immediately to the emergency room.

SOURCE: Stevens Johnson Syndrome › Herbal remedies may cause severe adverse reactions

Young Ian clung to life as 90 percent of his skin peeled away and his lungs and digestive tracts were burned. He beat the odds and survived, but his eyes were adversely affected. He suffered such mounting pain from ulcers and inflammation in the eyes that one Alberta physician suggested Ian’s eyes be removed to alleviate the pain. It was not an option Ian’s mother was willing to accept.

Over the past seven years, Ian has had 38 surgeries to correct his vision. Many of those years were spent in the dark. His last surgery, in October, has enabled him to see much more clearly and has restored his depth perception. Because SJS ate away the protective film over his eye, he now wears a deep contact lens to prevent his eyelid from collapsing onto his cornea.

It is a long and grueling road to recovery, but today 10-year-old Ian’s body shows few signs of SJS. His skin, treated by vitamin E capsules, has grown back, and – following doctor’s orders – he plays video games for two hours a day to exercise his eyes.

SOURCE: Stevens Johnson Syndrome › Canadian boy’s family still fighting to save eyes harmed by SJS

Kim experienced a rare reaction to the antibiotic that started with a headache and progressed quickly to toxic epidermal necrolysis (TEN), a severe form of Stevens Johnson Syndrome (SJS), a reaction to medication where the skin blisters and peels off. Ninety percent of the time the reaction is caused by drugs such as ibuprofen, antibiotics and anti-seizure medications.

Kim lost 70 percent of her skin and was put into a drug-induced coma. She was given a 30 percent chance of survival by one doctor. She managed to beat the odds, and was released from the hospital this week.

“Why aren’t people told that they could die if you have a reaction to this drug?” Kim’s father, Art Oake, posed to CBC News.

Nearly one in a million Canadians are treated for SJS/TEN each year. One in six die, according to the story. Toronto dermatologist Dr. Neil Shear urges patients who take antibiotics or drugs used to treat epilepsy to look for signs of adverse reactions, such as fever, tender skin and blistering or sores in the mouth. Patients who experience any reaction should stop taking the drug immediately and call their doctors, he said.

SOURCE: Stevens Johnson Syndrome › Father asks why he wasn’t warned of possible reaction to drug

“It is absolutely amazing that within three weeks of being admitted to ICU, she will be able to walk out of the hospital (with the help of a walker),” Lisa writes in a Dec. 17 update. Doctors say that Kim’s fast recovery has been staggering. One doctor told the family that when he first saw Kim when she admitted to the hospital weeks ago, he believed her chances of survival were only 30 percent.

Many who contract TEN, a more serious version of Stevens Johnson Syndrome (SJS), do not survive. SJS and TEN are rare but serious and potentially life-threatening hypersensitivity disorders that affect the skin and mucous membranes, causing the top layers of skin to peel away and the eyes and mouth to become blistered. SJS and TEN can be caused by an adverse reaction to common antibiotics and over-the-counter medications such as ibuprofen and Children’s Motrin.

Last month just before Kim was diagnosed, Elizabeth Patton, a 17-year-old girl from Brentwood, Tenn., was hospitalized with TEN. Her story ended differently. Just days after Thanksgiving, Elizabeth lost her battle to the disorder, leaving behind a family that vows to warn others about the seriousness of SJS and TEN.

According to Lisa’s updates, Kim was taken out of her drug-induced coma last week, though she remained in the hospital’s burn unit., unable to see guests. She began getting around with the help of a walker and was finally able to visit with her children. In a sense, she willed herself well, turning down morphine and working hard to recuperate, so that she could be home with her family for Christmas.

Call it a Christmas miracle, but it appears Kim’s Christmas wish is coming true.

SOURCE: Stevens Johnson Syndrome › Canadian TEN victim leaves hospital in time for Christmas

SJS and TEN are dreadful conditions that cause painful rashes and blisters on the skin and can also affect all orifices including the mouth and eyes. It can lead to blindness or even death. Kim has lost the skin on more than 70 percent of her body. To protect her from the severe pain, she was put into a drug-induced coma.

Every day is a struggle for Kim. Doctors are keeping close watch on her temperature, monitoring her condition, hoping each day that she can be taken off the ventilator for good. Doctors say this is a critical time for Kim as the skin loss makes her more prone to infections from fungi and bacteria that can lead to septicemia, the leading cause of death with TEN. The family has been cautious, even scared to visit her for fear of contaminating her. The family is hoping her two children, Shauna and Hunter Quilty, will be able to visit her on Christmas day.

With more than 2,000 members, the Facebook site is quickly gaining attention from family, friends, and even others who have been touched by SJS and TEN.

SOURCE: Stevens Johnson Syndrome › Family creates support group to raise awareness of SJS/TEN

Within days, everything changed. Kim started having severe headaches and then target-like blotches sprang up on her skin.

The mother of two is now in a coma and on a ventilator, her body wrapped in antibiotic gauze. The severe reaction to the antibiotics has left her without skin on 70 percent of her body. Doctors have given her a 50 percent change of surviving, according to Canada.com.

Kim was diagnosed with toxic epidermal necrolysis (TEN), a severe form of Stevens Johnson Syndrome (SJS), in which the top layer of skin peels off causing painful blisters and lesions. SJS and TEN are most often triggered by drugs such as ibuprofen, antibiotics and anticonvulsants. TEN most severely affects the mucous membranes such as the eyes and mouth causing painful blisters that make eating painful and can cause blindness.

Doctors say now is the most critical time for Kim as the skin loss makes her more prone to infections from fungi and bacteria that can lead to septicemia, the leading cause of death with TEN. Kim’s family is scared to even go into her room for fear of contaminating her. The best news for now is that Kim’s eyes have not been affected, nor are there any signs of organ problems.

SOURCE: Stevens Johnson Syndrome › Canadian woman with TEN fights for life

Julie McCawley became a victim of SJS when she was just 11 months old. Her mother, Jean McCawley, established the SJS Foundation in 1995 to provide the public and medical communities with information about the adverse allergic drug reactions and to serve as a support outlet for victims of SJS and their families. Today, Julie is 14 years old and as a result of SJS has lost vision in one of her eyes.

Last August, Julie designed a Web site to help educate the public about SJS from a child’s perspective. The SJSKIDSSUPPORT.org site uses cartoons and plain language to explain the disorder. “I hope that it gives healthy kids some insight into why SJS kids may look different on the outside or why many of us are so sensitive to the sun, but that we’re the same on the inside. Then, maybe the next time they meet a person with SJS or any kind of disability, they will be more tolerant of someone who’s not exactly like them,” Julie says in a recent press release.

The Web site also honors the memory of children who have lost their battle with SJS. “The idea for this really is an extension of a special bulletin board that I keep at home that has the photos of children who have died from SJS. Their beautiful faces and tragic stories remind me that we need work harder at educating everyone about the dangers of SJS,” she adds.

Julie’s story can be found on the Foundation’s Web site at www.sjsupport.org. The SJS Foundation sponsors active support groups in 18 states, and through its Yahoo support groups serves adults and children afflicted by SJS from around the world, including Australia, Canada, Europe, Mexico and South Africa.

SOURCE: Stevens Johnson Syndrome › Young SJS victim creates Web site for children with SJS