ProQuad is the trade name for the MMRV vaccine produced by Merck Pharmaceuticals. It is typically given to children between 1 and 2 years of age. Children in this age group are usually given the MMRV or the three-in-one MMR (measles-mumps-rubella) plus the chickenpox vaccine. The MMRV vaccine made headlines recently because it has been associated with a higher incidence of fever seizures in children 7-10 days after the shot was given. Studies also show the drug carries a risk of SJS. However, since the vaccine combines four different vaccinations, researchers say it is hard to pinpoint which drug is the offending one.

SJS has been associated with more than 2,000 medications, most often antibiotics and ibuprofen. Those who suffer from the condition develop painful rashes on the skin that blister over and cause the top layer of the skin to peel away. This exposes the body to life threatening infections. Blisters also can form in the eyes and mucous membranes, leading to ocular complications, dehydration and other serious problems.

Any skin reactions with any medication should be immediately brought to the attention of a health care provider and the offending medication stopped. Adverse events with this or any other drug should be reported to the Food and Drug Administration’s MedWatch Adverse Event Reporting Program at www.FDA.gov/MedWatch.

SOURCE: Stevens Johnson Syndrome › MMRV vaccine linked to serious skin reaction known as SJS

One reason why it is hard to pinpoint what medications may cause SJS is because the time it takes for the reaction to occur varies. For some, the symptoms occur almost immediately. Others report experiencing symptoms days, weeks or even a month after taking the offending medication.

SJS is a medical emergency, usually demanding hospitalization. For many, SJS begins with flu-like symptoms such as a fever and sometimes sore throat, cough and burning eyes. A rash develops on the skin and becomes gradually worse, blistering over and causing the top layer of skin to peel away. This exposes the body to life-threatening infections and in many cases, patients with SJS are treated in burn units. Blisters can also form on the mucous membranes, such as the eyes, mouth and genitals. This can lead to serious ocular problems and dehydration.

The most severe form of SJS is toxic epidermal necrolysis (TEN), which occurs when a larger percentage of the body is affected. Both SJS and TEN can be fatal. Some statistics list TEN with a 40 percent fatality rate.

The condition is rare – affecting about one in a million people – thus, it is often misdiagnosed. Early diagnosis and discontinuation of the offending drug can curtail some of the severity of the condition though in most cases SJS and TEN have to run their course. There is no known treatment, and there is no test to determine who will get SJS or TEN, which makes it even more important for people to understand the symptoms and to act quickly if they experience any adverse reactions after taking medication.

SOURCE: Stevens Johnson Syndrome › What is Stevens Johnson Syndrome?

Brown was booked about a month ago for not paying child support. She said the jail physician had switched her anticonvulsant medication to Dilantin, which triggered the allergic reaction. While rare, SJS has been linked to more than 2,000 medications, commonly antibiotics, anti-inflammatory medications (such as ibuprofen) and anti-seizure drugs. There is no way of knowing who will have the reaction; the condition affects both children and adults.

“Her skin is burning off. Her eyes are swollen shut,” Brown’s sister-in-law Alysha Banks told JC Online. “If you see her, it’s just terrible.”

Much of Brown’s skin has peeled away, leaving her at risk for serious infections. Like many patients hospitalized with SJS, Brown is being treated in a burn unit. Blisters in the mouth can lead to dehydration, and sores in the eyes can cause scaring and vision problems. Doctors haven’t said how long Brown will be hospitalized.

SOURCE: Stevens Johnson Syndrome › Seizure medication triggers severe allergic reaction in inmate

Jordan Lewis

SJS is a serious reaction that while rare, can be triggered by a number of medications. Antibiotics and anti-inflammatory drugs are among the drugs most often associated with the condition, including over-the-counter versions of ibuprofen. As many as 40 percent of those who develop SJS will die. Those who do survive often have lifelong consequences caused by scars on the eyes or internal organs from the painful blisters. Blindness and vision problems are a common lingering symptom. For Jordan, that threat was all too real.

“We started to be concerned he might not live,” said his mother Maria Green. When he finally began to pull through, “he hadn’t opened his eyes for a week.” The damage had been done. Jordan was practically blind.

At that time, Jordan underwent an unprecedented surgery that placed in Jordan’s eyes and eyelids a protective coating made of amniotic membrane found in human placenta. The surgery was a success. Before long, he was playing video games.

Now, Jordan has his sights on his future. He wants to be a doctor. “If it wasn’t for (my doctor), I’d be at a school for the blind,” Jordan said. “I wouldn’t be where I am today.”

SOURCE: Stevens Johnson Syndrome › High school graduate inspired to be doctor after bout with SJS

Click here to view the embedded video.

“Seemed like a lifetime ago,” she comments on her video titled “Getting on, moving on.” Photos flash on the screen of a lovely woman with flowing dark hair. “A few days before Stevens Johnson Syndrome turned my world around,” she writes under a picture of herself, a vision of health. The following photos show the stark reality. SJS tore through her body, blistering her skin and internal organs, sending her to the hospital where she was placed in a drug-induced coma for six weeks. The fact that she survived is a miracle.

SJS is a rare reaction to medication. More than 2,000 drugs have been linked to SJS, most commonly ibuprofen, antibiotics, anti-viral drugs and anti-convulsants. The condition begins as a rash that blisters over causing the skin to peel off in sheets. The eyes and internal organs can also be affected, causing dangerous dehydration, serious problems with the eyes, and life threatening infections.

“Once I was a victim,” Rachel writes. “Then there came a time when I began to thrive.” There is no denying that Rachel has been through a long recovery. The scars still show on the patches of white on her dark skin, but her smile shines brighter. “And now,” she says, “I have finally begun to flourish.”

SOURCE: Stevens Johnson Syndrome › SpunkyRachel: ‘I have finally begun to flourish’

Tibotec Therapeutics

Early this year, Intelence was approved by the the Food and Drug Administration (FDA) for use in the treatment of HIV. At that time, data indicated a slight risk of SJS.

SJS, and its most severe form, toxic epidermal necrolysis, TEN, are identified by a rash on the skin that blisters over causing the skin to peel off in sheets. The condition is extremely painful and often requires hospitalization to treat the open wounds on the skin, mouth, eyes and other mucous membranes. Complications include infection, dehydration, vision problems, organ dysfunction and death.

SJS and TEN is a severe adverse reaction to medication. Some of the dugs most commonly associated with SJS and TEN include ibuprofen, antibiotics, and anti-seizure and anti-viral medicines.

Tibotec Therapeutics, in cooperation with the (FDA), issued a Dear Healthcare Professional Letter informing them that the WARNINGS and PRECAUTIONS sections of the drug information was updated to include warnings of severe skin and hypersensitivity reactions from use of Intelence (etravirine).

The letter urged health care providers to discontinues the medication immediately if signs or symptoms of severe skin reactions or hypersensitivity reactions develop including but not limited to severe rash or rash accompanied by fever, general malaise, fatigue, muscle or joint aches, blisters, oral lesions, conjunctivitis, facial edema, hepatitis, and eosinophilia.

A delay in stopping the treatment after the onset of a severe rash may result in a life-threatening reaction.

SOURCE: Stevens Johnson Syndrome › HIV drug linked to deadly skin condition

SJS is a severe adverse reaction to medication. For Rachel, it was two doses of ibuprofen purchased from a grocery store. Two weeks later, her body reacted violently, developing rashes on her skin that blistered over and peeled off. She was admitted to the hospital and placed in a drug-induced coma while doctors worked to save her life. Her peeled body resembled a burn victim’s and she was prone to infection and other serious problems. After her months-long recovery, Rachel returned home and made her first video.

The road of recovery has not been easy. Rachel talks about her bout with depression and the gradual improvement of her skin and growth of hair. In some videos she is mad or sad. In others, she sounds upbeat. In her most recent video, Rachel has just returned from vacation and the trip sounds therapeutic.

“I’m hoping for the best,” she says.

She may think her videos fall on deaf ears, but a recent commenter made her realize just how important her message is to others who struggle with the condition.

“I wasn’t going to make another video until I saw this girl Shawnee’s video. And she told me I was an inspiration to her,” she says. “So I’m going to continue making videos until I feel as though it has been enough.”

Watch Rachel’s latest video below:

SOURCE: Stevens Johnson Syndrome › Rachel continues on road to recovery from SJS

Blisters also formed on his eyes, causing his eyelids to fuse closed. Ophthalmologists tried to pry his eyes open but it wasn’t until 17 days later that James was able to open his eyes. The damage had been done. His left eye was so badly scarred that even now he can’t bear to go without sunglasses, even indoors. And he cannot make his own tears, which exacerbates his condition.

James’ condition, toxic epidermal necrolysis, TEN, is the most severe form of Stevens Johnson Syndrome, SJS, a severe adverse reaction to medication. Many medications have been linked to SJS and TEN, most often ibuprofen, anti-seizure medication and antibiotics. Many medications have warnings listed in the fine print of the packaging, but those warnings often go unnoticed and can even be misdiagnosed by doctors. Early diagnosis and treatment can be key to survival.

Now 7 years old, James’ medical costs and treatments are mounting and his parents worry how they will provide for him in the months and years to come. Doctors say their son needs eye surgery to prevent his lashes from growing inward and irritating his eye further. Both James’ parents work at a hospital but their health insurance plan no longer covers the boy’s treatment. Now they have to rely on the kindness of strangers to get their son the treatment he needs. Luckily, just last week, the Dubai branch of the Moorfields, the UK’s top eye hospital, offered to examine James free of charge.

“This nasty condition is essentially untreatable,” said Dr. Chris Canning, the chief executive and medical director at the hospital. “There is no miracle cure anywhere in the world but there are things that can be done to make life easier for James.”

James’ mother is thankful but she still feels helpless. “If I could only give my tears to my child, I would be happy,” she said.

Source: The National

SOURCE: Stevens Johnson Syndrome › Boy suffering with SJS/TEN receives free exam from hospital

SJS, or its most severe form, TEN, toxic epidermal necrolysis, is caused by a severe adverse reaction to medication, most commonly ibuprofen, antibiotics and anti-seizure drugs. More than 200 medicines have been associated with SJS/TEN, but few people are aware of the condition. Warnings of the risk of SJS/TEN often can be found in the fine print of the medicine’s insert or packaging. But even doctors can have a difficult time diagnosing the painful condition.

SJS/TEN usually begins with a rash on the skin that can blister over, causing the skin to peel off in sheets. Mucous membranes can be affected, causing blisters on the eyes and inside the mouth. Dehydration, ocular complications and infection can result. Patients suffering from SJS/TEN are usually treated in burn units, as was Cloanne, who died at the University of Utah Hospital Burn Center.

The premature death of Cloanne has deeply touched her family, who says she “will be missed by many, many people. She loved doing and caring for others; whether it be doing a little shopping for the perfect outfit or being of service by babysitting and spending time visiting.”

SOURCE: Stevens Johnson Syndrome › Utah woman dies from complications of SJS

Amy Lightfoot, was diagnosed with SJS in January and spent several weeks in the critical are unit at Nottingham City Hospital until her death last March. SJS is a rare but life-threatening condition in which a rash forms on top layer of skin, blisters over and peels away. Blisters can also form on the eyes, throat, mouth and internal organs. SJS is a severe adverse reaction to medication, such as ibuprofen, antibiotics and anti-seizure medication.

The recordings will be sold along with a CD by the band No Eyed Deer, of which Amy and her boyfriend Lee Brown were members. Amy’s parents say selling the music to raise money for the hospital is a perfect way to give back to the hospital that cared for her.

“The staff who treated Amy at the hospital were just fantastic, but being there for so long makes you realize the cost of the equipment they are using – a ventilator alone costs about 30,000 pounds,” Amy’s mother Carol said.

Carol said she was previously unaware of her daughter’s recordings, which are titled Satellite and Waiting. “They were done while she was studying at the Joseph Wright Centre and we thought releasing them would be a nice way of remembering Amy, while raising money at the same time,” she said.

SOURCE: Stevens Johnson Syndrome › Family who lost daughter to SJS releases songs for charity

The new information, gathered from a clinical study and postmarketing reports, revealed sometimes fatal incidences of gastrointestinal perforation, bullous, blistering and exfoliative skin conditions including cases suggestive of Stevens Johnson Syndrome (SJS) and/or toxic epidermal necrolysis (TEN) and ocular disorders including corneal perforation or ulceration.

SJS/TEN is a rare but life-threatening reaction to medication that presents with a rash that blisters over, causing the skin to peel off in sheets. It can also affect the mucus membranes, causing blistering and ulceration of the mouth, eyes and internal organs. Several commonly used medications have been linked to SJS/TEN including ibuprofen, antibiotics and antiviral drugs.

Tarceva is used in the treatment of locally advanced or metastic non-small cell lung cancer after failure of at least one prior chemotherapy regimen. It is also indicated for the first-line treatment of patients with locally advanced, unresectable or metastatic pancreatic cancer.

The updated WARNINGS AND PRECAUTIONS section of the labeling reflects dose interruption and/or discontinuation instructions. For any questions, or to report adverse events suspected to be associated with the use of Tarceva, call 1-877-TARCEVA (1-877-827-2382).

Alternatively, adverse event information may be reported to the FDA’s MedWatch reporting system by phone at 1-800-FDA-1088, by facsimile at 1-800-FDA-0178, by mail to MedWatch, HF-2, FDA, 5600 Fishers Lane, Rockville, MD 20857, or by the internet at http://www.fda.gov/medwatch/index.html.

SOURCE: Stevens Johnson Syndrome › New SJS warnings added to cancer treatment drug

SJS is a serious condition. It is most identified by a rash on the skin. The rash can blister and peel away, giving victims the appearance of having fourth degree burns. Many are treated in burn units. Blisters can form on mucus membranes such as the eyes and throat making it difficult and painful for patients to eat, drink or void. Eye conditions and even blindness can occur. In more severe cases, SJS can cause seizures, coma and even death. In some cases, rashes and lesions may never appear, and often the condition goes undiagnosed until it is too late.

Several common prescription and over-the-counter medications have been linked to SJS, including ibuprofen, anti-seizure medicines and antibiotics. Not all drug labels provide current warnings about medical risks. For example, Motrin provided a warning of SJS on its label when the medication was only available by prescription. The over-the-counter Motrin product does not provide a warning on its label.

If you experience any symptoms of SJS, contact your doctor and ask to be taken off the medication. You may also want to consult with a product liability lawyer, as many are accepting legal cases to submit lawsuits against the makers of the drug companies for failing to adequately warn consumers of the risk for this serious adverse reactions to their medications.

SOURCE: Stevens Johnson Syndrome › Beasley Allen attorney warns public of serious adverse drug reactions

Lisa had become ill with SJS after taking antibiotics prescribed to her following minor surgery. SJS is a rare but life threatening condition that begins with a rash that blisters over, causing the skin to peel off in sheets. The eyes and mucus membranes also can be affected, causing ocular complications and vision loss. More than 200 medications have been linked to SJS, most often antibiotics, ibuprofen and anti-seizure medication.

Like others with SJS, Lisa was moved to a burn unit. There, her blisters multiplied and covered her face, torso, legs and arms. They gradually scabbed over. Her eyes also were affected, but a specialist deemed damage to her vision was minimal. The blisters in her mouth, tongue and throat made eating and drinking excruciatingly painful, but she worked hard to drink supplemental beverages so that she could nourish her body. The alternative was a feeding tube.

Her first few days in the hospital were most crucial, as there was the possibility her condition could worsen to a condition known as toxic epidermal necrolysis, or TEN.

“It took everything in my power to hold back the tears during the 30-minute visit. While I was torn up inside, I didn’t want to show my sorrow for fear it would make her feel worse than she already did. I wanted to be strong for her,” Mark writes.

Lisa continues to improve, and Mark says he is hopeful he will be sitting around a campfire soon, “enjoying a beverage and counting our blessings,” he says.

SOURCE: Stevens Johnson Syndrome › Update on newspaper editor’s sister with SJS

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

SJS is a rare but life-threatening disorder usually caused by an adverse reaction to common medication such as antibiotics, anti-seizure medication and ibuprofen. SJS is a hypersensitivity disorder that presents with a rash on the skin that blisters over causing the skin to peel off in sheets. Mucus membranes also can be affected, with blisters developing on the eyes and in the mouth which can lead to ocular problems, dehydration, infection and even death.

Rachel’s videos show her gradual physical progress. What we see is that surviving the condition is the first hurdle. The next is the physical recovery – as the skin heals and the hair grows back. The emotional recovery can take longer, and Rachel shares that promise and pain in her last two videos from February 2, and April 9.

Rachel tells us that she feels physically stronger every day. She is in therapy now to deal with the depression that makes her “fight the urge every day not to cry.” She has noticed those closest to her drift away or change the way they treat her. One blessing is a friend she has found who suffered from SJS five years ago. The friend shared a picture of herself – completely physically healed from the peeled-off skin and hairlessness. It gives Rachel hope that she, too, will look like her old self again.

Her video testimonials are honest and real, and not only serve as a healing mechanism for her, but a way for her to help others. The videos, she says, “may benefit somebody in the future.”

SOURCE: Stevens Johnson Syndrome › SpunkyRachel discusses physical, emotional healing from SJS

Shchekochikhin died July 3, 2003 at the age of 53 following a brief illness. His symptoms were similar to poisoning by radioactive materials that raised speculation that the journalist may have been purposely poisoned. Shchekochikhin wrote about and campaigned against organized crime and corruption.

In the years leading up to his death he had written a series of investigative articles on a Moscow furniture store allegedly at the center of a money laundering scheme that involved FSB officials. His last story on the subject detailed the murder of a key witness in the case. Two weeks later, Shchekochikhin fell ill.

According to CPJ: Committee to Protect Journalists, Shchekochikhin’s illness began with flu-like symptoms including fever, sore throat, body aches and a general burning sensation. He was diagnosed with an acute respiratory viral infection. His condition continued to decline and four days later, on June 21, 2003, he was admitted to the hospital. His symptoms worsened. His hair to fell out, his skin began to peel away and his organs started to fail. He died two weeks later. Doctors said he was suffering from an allergic reaction but his condition remained a “medical secret.”

According to Reuters, Russian investigators claim medical tests revealed no narcotics, psychotropics, strong poisons or heavy metals in Shchekochikhin’s body.

“No traces of poisoning or damage to the body that would indicate Yuri Shchekochikhin died a violent death were found,” according to the investigators’ recently released statement. They listed TEN, also known as Lyell Syndrome, as the condition that killed the journalist.

TEN is the most severe form of Stevens Johnson Syndrome, or SJS. It is most often caused by an extreme adverse reaction to common medication such as antibiotics, ibuprofen or anti-seizure medication. It presents with a rash on the skin that blisters over and peels away. Mucus membranes such as the eyes and mouth can also blister over causing serious eye complications and dehydration.

SOURCE: Stevens Johnson Syndrome › Russian investigators say journalist’s mysterious death caused by TEN

In 1996, McCawley’s then-11-month-old daughter Julie had a severe adverse reaction to seizure medication. Called Stevens Johnson Syndrome, or SJS, the condition is rare but life threatening. SJS presents with a rash on the skin that blisters over and peels away. Blisters also can form on mucus membranes such as the eyes and mouth, leading to dehydration, infection or vision problems. It caused McCawley’s young daughter to go blind.

McCawley had never heard of SJS but soon learned how more than 200 medications have been linked to SJS, such as anti-seizure medicines, ibuprofen and antibiotics. She set out to raise awareness of the condition so that other people wouldn’t suffer the way she and her daughter did.

In 1996, the Stevens Johnson Syndrome Foundation was launched. It serves as a community forum for those who have been touched by SJS and provides information on treatments and research to help those who suffer long-term side effects of SJS.

As the recipient of ABC 7’s Extreme Makeover contest, McCawley receives $5,000 and her foundation receives $5,000. McCawley says she will use the foundation money to print and distribute more fact sheets about SJS to hospitals throughout the country.

The money she receives personally has already been spent, she says. She used it to purchase a new insulin pump for her youngest daughter, Kerry, who has Brittle Type I diabetes and Celiac’s disease. It will also cover the family’s mounting medical expenses. Julie had three eye surgeries last year alone and McCawley’s husband suffers from rheumatoid arthritis and chronic obstructive pulmonary disease.

SOURCE: Stevens Johnson Syndrome › SJS Foundation founder wins Extreme Makeover contest

SJS is a rare but life-threatening condition that presents with a rash that blisters, causing skin to peel off in sheets. It also can affect the mucus membranes, causing blisters in the eyes and mouth. It is most often caused by a severe adverse reaction to common medication such as antibiotics and ibuprofen. Sara’s mother says she can’t recall what medication Sara may have taken that caused such a reaction.

Sara was admitted to the hospital and her mother and father kept a vigil at her bedside while doctors worked to stabilize her condition. About 50 percent of her skin peeled away, and she was put in a medically induced coma to help control pain as she recovered.

Sara beat the odds and pulled through. She is now in the pediatric unit at the hospital, out of her coma, and slowly regaining strength as her skin repairs. Her classmates have held fundraisers at school to help her family cover the mounting medical costs. To date, the school has raised more than $2,000, and more fundraisers are planned in the weeks to come.

Source:
Grand Haven Tribune

SOURCE: Stevens Johnson Syndrome › Michigan girl recovers from SJS

The procedure is highly complex, performed in two stages and requiring a team of 15 specialists from radiology, dental and eye. It is currently only performed in Singapore, India and Japan.

“We have successfully restored vision to the most severe cases of patients who had been blinded in accidents and chemical burns. Some suffered from Stevens Johnson Syndrome (SJS), while others have had multiple corneal graft failures. In all our cases, maximal visual potential has been achieved,” says Professor Donald Tan, Head of Corneal Service and Director at SNEC.

SJS is a rare but life-threatening condition in which blisters forms on the skin, mouth and eyes, causing complications such as dehydration, infection, blindness and even death. SJS is often caused by a serious adverse reaction to common medications such as ibuprofen, antibiotics and anti-seizure durgs.

In the first phase of surgery, “First, the eye is opened up and the entire inner surface of the eyelids, cornea and scar tissues are removed. We then transplant the inner mucosal lining of the cheek onto the new eye surface. Next, we remove a canine tooth and some of the adjacent bone from the patient. We shave this down, drill a hole then fit it with an artificial cornea made of a medical-grade plastic optical cylinder. After this, we implant it into the patient’s cheek to grow a new blood supply,” he says.

Two months later, “We open the cheek mucosal lining over the eye, remove the tooth-bone-cylinder from the cheek and insert this into the cornea.”

Since all the “hardware” – tissue, bone and tooth – are taken from the patient, there is no issue of rejection whatsoever. After the final surgery, light is able to enter through the plastic cylinder, and patients will be able to regain good vision, Tan says. “Over half of our patients achieve 20/20 vision, three-quarters regain at least driving vision of 20/40, and the rest have reached their best visual potential.”

SOURCE: Stevens Johnson Syndrome › New procedure restores sight to those blinded by SJS

But last March, things went terribly wrong for Hannah. She noticed rashes developing all over her body. Those rashes began to blister and become painful. They also formed in her mouth and were so debilitating she couldn’t even speak. She had to write on a pad just to communicate. The rashes were accompanied by flu-like symptoms, and had become so severe in such a short time, she was taken to the emergency room. The doctors were baffled.

Hannah was admitted to the hospital while doctors monitored her worsening condition, giving her morphine for the pain. An eye doctor was called in to examine her eyes, which by now had begun to blister as well. That’s when Hannah first learned the name of her condition – Stevens Johnson Syndrome, or SJS.

SJS is a rare but life-threatening reaction to common medication in which the skin blisters over and begins peeling off in sheets. The eyes, mouth and other mucus membranes can blister over as well causing serious problems such as dehydration, infection and even death. Trileptal, which is also used to treat seizures, is one of several medications that can cause the serious reaction known as SJS. Other common medications linked to the condition include antibiotics and anti-inflammatory drugs such as ibuprofen.

Hannah spent three weeks in the hospital and gradually recovered. She attends high school, rides horses and enjoys the life of any 16-year-old. While she has overcome her battle with SJS, she still has lingering conditions to deal with. SJS has made focusing with her eyes difficult and painful. She recently got glasses to help with the condition. She also has to be careful what medications she takes because some medications may trigger SJS again. But she isn’t letting the problems keep her from doing “you know, normal high school teenager stuff.”

SOURCE: Stevens Johnson Syndrome › Hannah doing much better a year after battling SJS

The shot was administered to students at several schools in the West Java Province as part of the government’s national immunization program. No other children reported having severe problems, but shortly after receiving the vaccine, the young Syadiah came down with a fever and began complaining of joint pain. A health care provider gave her paracetamol syrup and an “unknown powdered medicine.” But the little girl’s health continued to fail. She started developing rashes over her body and blisters broke out on her skin, lips, tongue and gums. She was admitted to the hospital and diagnosed with SJS.

SJS is a severe adverse reaction to medication that affects about one in a million people each year. There are as many as 200 medications linked to SJS, most commonly antibiotics, anti-inflammatory medicines such as ibuprofen, anti-viral medications such as those for HIV/AIDS, and anti-seizure medicines. As the condition progresses, skin can peel off leaving the body susceptible to infection and possibly even death.

A health official in Depok debunked the notion that medical malpractice is to blame for the girl’s SJS. He is concerned that media coverage of the adverse reaction may scare people from having their children immunized.

“The media’s focus on the wrong reasons behind [Syadiah’s] condition could put the nation in greater danger,” he said.

SOURCE: Stevens Johnson Syndrome › Girl suffers SJS after receiving tetanus shot

Intelence is a tablet available only by prescription. It is a type of anti-HIV medicine called a non-nucleoside reverse transcriptase inhibitor (NNRTI), also known as a non-nuke. It is used to control HIV infection in adults and must be used in conjunction with other HIV medications. Intelence is for patients who have previously received treatment for HIV-1 and showed resistance to NNRTIs and protease inhibitors.

The clinical trials revealed that Intelence does carry a slight risk for serious skin reactions such as Stevens Johnson Syndrome (SJS), hypersensitivity reaction and erythema multiforme.

More than 200 medications have been linked to SJS and its more severe form, toxic epidermal necrolysis (TEN), most commonly ibuprofen, antibiotics and anti-seizure medications. SJS and TEN are severe expressions of a simple rash known as erythema multiforme. As the condition worsens, the rashes blister over causing the skin to peel off. Mucus membranes, such as the mouth and eyes, can blister over causing dehydration, infection, blindness and even death.

Patients taking medication, including Intelence, should be aware of the potential life-threatening risk of SJS/TEN

SOURCE: Stevens Johnson Syndrome › HIV treatment linked to slight risk of SJS/TEN

Late last December Ryan was diagnosed with pneumonia and days later he suffered a severe adverse reaction to the medication he was given to treat his illness. A rash formed over his body and his skin began to blister and peel away. Blisters also formed in his eyes and mouth, making his eyes and throat swell shut and leaving him unable to eat or drink. He stayed in the hospital for 12 days while doctors worked to save his life.

SJS is a rare but serious reaction to medication. More than 200 drugs have been linked to the condition, most commonly ibuprofen, antibiotics and anti-seizure medication. Some pharmaceutical companies are facing lawsuits from families affected by SJS, claiming they were not sufficiently warned of the possible life-threatening condition caused by the medications they or their family members were given. SJS, and its most severe form, toxic epidermal necrolysis (TEN), has a reported incidence of about one case per million people each year.

Ryan returned home from the hospital on Jan. 12. Though he was 28 pounds lighter and was extremely exhausted, he vowed to return to his wresting team. Last week he played in the tournament. Though he didn’t win, he says “I’m so glad to be back out there.”

SOURCE: Stevens Johnson Syndrome › High school wrestler’s fight against SJS heroic

The disease is a contagious respiratory illness. Symptoms usually start suddenly and may include a high fever, headache, tiredness, cough, sore throat, runny or stuffy nose, body aches and diarrhea and vomiting.

One way doctors help patients treat and prevent the flu is with TAMIFLU. Roache Laboratories, the company that makes TAMIFLU, says it is the No. 1 doctor-prescribed flu medication for the treatment of the flu for patients who have been symptomatic for no more than two days.

The medication is approved for both adults and children aged 1 year and older. But according to its safety labeling, and an announcement by the U.S. Chamber of Commerce, during post-marketing rare cases of Stevens Johnson Syndrome (SYS) and toxic epidermal necrolysis (TEN) have been reported by patients using TAMIFLU.

SJS and TEN are serious adverse reactions to medication. There are more than 200 types of medications that have been linked to SJS/TEN, most commonly ibuprofen, antibiotics and anti-seizure medication. The reaction begins with a rash on the skin that blisters over and causes the skin to peel off in sheets. Mucus membranes, such as the eyes and mouth, can blister over leading to serious health concerns such as dehydration, infection, blindness and even death. TEN is the most severe form of SJS, and carries a fatality risk of up to 30-40 percent.

Patients who experience a severe adverse reaction to medication they are taking are encouraged to contact their healthcare provider immediately or go to the emergency room.

SOURCE: Stevens Johnson Syndrome › TAMIFLU carries risk of serious adverse reaction

Darunavir, manufactured by Tibotec, belongs to a class of anti-HIV drugs called protease inhibitors (PI). It works to prevent cells infected by HIV from producing new virus, thus reducing the amount of virus in the body. Darunavir must be coadministered with 100-mg ritonavir and with other antiretroviral agents. It was approved by the FDA in June 2006 for HIV-positive adults who were treatment-experienced.

Last October, darunavir was approved for HIV-positive individuals beginning treatment. The medication has proven effective for patients who are not likely to respond to older PIs and for those who are starting antiretroviral therapy for the first time.

SJS and its more severe form, toxic epidermal necrolysis (TEN), are serious adverse reactions to medication. The reaction begins with a rash that blisters over, causing the skin to peel off in sheets. Mucus membranes in the eyes and mouth also can blister over, leading to dehydration, infection, blindness, and even death. More than 200 medications have been linked to SJS and TEN, including NSAIDs such as ibuprofen, antibiotics and anti-seizure medication.

Other warning included in the labeling revisions for darunavir include warnings of potential drug-drug interactions and pregnancy risk. Darunavir should not be taken with dihydroergotamine, ergonovine, ergotamine, methylergonovine, cisapride, pimozide, oral midazolam, triazolam, St. John’s Wort, lovastatin, simvastatin, or rifampin.

Darunavir also should be taken during pregnancy only if the potential benefit justifies the potential risk, according to the report. Mothers on darunavir should not breast feed, and children younger than 3 should not take darunavir.

SOURCE: Stevens Johnson Syndrome › HIV medication carries warning of SJS

One such resource is an online survey designed to develop an international SJS/TEN registry with the goal of lobbying the federal government for a mandatory reporting system of all adverse drug reactions. You can help the Foundation reach this goal by filling out the survey.

Another valuable tool is the direct link to the FDA’s MedWatch: Reporting by Consumers link that easily enables consumers to report any serious reactions to drugs and medical devises. While individuals are encouraged to report these reactions to their health care provider so that the information can be evaluated based on your medical records, that step is not required. Consumers can simply complete the online form and report the incident directly to the FDA.

SJS/TEN is a rare but life-threatening hypersensitivity condition most often caused by common medication, including ibuprofen, antibiotics and anti-seizure drugs. It affects the skin and mucus membranes marked by a rash on the skin that blisters over and peels away in sheets. The mouth, eyes and other orifices can be affected causing dehydration, infection and serious eye problems such as blindness.

SOURCE: Stevens Johnson Syndrome › SJS support site offers valuable resources to those affected

Researchers like Wen-Hung are asking why.

SJS is a life-threatening hypersensitivity condition that causes rashes to form over the body. The rashes blister over, causing the skin to peel off in sheets. SJS also can affect the mucus membranes, causing blisters to form in the mouth and eyes. Death can result in about 10 percent of patients with SJS. If it progresses to its most severe form, toxic epidermal necrolysis, (TEN) the death rate soars to 40 to 50 percent. SJS/TEN is linked to more than 200 medications, most commonly ibuprofen, antibiotics and anti-seizure medication.

A group of Chang Gung researchers were aware that the anticonvulsant carbamazepine was linked to many cases of SJS, but through its own study using Taiwanese patients, researchers discovered a possible connection – “a high correlation between hypersensitivity to carbamazepine and a single allele, human leukocyte antigen B1502,” according to the report. As many as 80 percent of Taiwanese carry the allele. The discovery lead to an FDA warning in the U.S. of the increased risk of SJS/TEN for patients of Asian ancestry with the B1502 allele who take carbamazepine.

Since the discovery, researchers began focusing on developing a test to determine whether a patient has the B1502 allele, and lead researcher Wen-Hung turned his attention on a treatment to halt the progression of SJS/TEN.

SOURCE: Stevens Johnson Syndrome › Taiwanese researchers pinpoint genetic marker for SJS

The latest drug to make this list is bendamustine, marketed under the names Teanda in the U.S. and Ribomustin. Bendamustine was first approved by the FDA for treatment of CLL in March 2008 and for NHL in October 2008. It is the first drug approved to treat CLL since 2001.

According to the report, one case of TEN was reported following the use of bendamustine in combination with rituximab, a chimeric monoclonal antibody. TEN has been previously reported for rituxima. Bendamustine’s relationship to TEN has not been fully determined. The label urges healthcare providers: “Where skin reactions occur, they may be progressive and increase in severity with further treatment. If skin reactions are severe or progressive, Treanda should be withheld or discontinued.”

SOURCE: Stevens Johnson Syndrome › New labeling for CLL, NHL drug includes TEN warning

Currently, the SAEC is conducting a study that addresses Stevens Johnson Syndrome (SJS). SJS is a rare but life-threatening reaction to medication. SJS affects the skin and mucus membranes, causing blisters to form on the skin and the skin to peel off in sheets. Blisters also can form on the mouth and eyes, causing serious eye complications and even blindness. SJS is linked to more than 200 medicines. Most often SJS is linked to ibuprofen, antibiotics and anti-seizure medication.

Researchers for the SAEC project will look for genetic variations linked with SAEs from the SNP Consortium and the Human Genome Project’s Hap Map Project.

“The traditional research model only provides one piece of the puzzle in understanding the genetic variations that could lead to an increased risk of an adverse event. Because of the number of patients needed to tie a genetic variant to an SAE, and the resulting cost of doing these studies, no one company, research center, or agency can efficiently conduct this research on its own. The most efficient way to study drug-related SAEs is to create a global, publicly available ‘knowledge base’ that will help identify the genetic variations that may predict SAEs,” SAEC Chairman and CEO Arthur Holden said in a September 2007 announcement in Highlight Health, when the consortium was formed.

The SAEC research study will be made available within 12 months of completion. If initial studies are successful, the consortium vows to study every major SAE to find its genetic cause.

SOURCE: Stevens Johnson Syndrome › Consortium studies genetic markers, hopes to predict SJS

Beatham’s girlfriend of two years, Louise Armstrong, came down with flu-like symptoms in late December. The morning of New Year’s Eve, Beatham woke in their Penrith, Australia, home to find his partner gravely ill with blisters covering her body. He called the ambulance, but it was too late. Armstrong had died.

According to the News & Star, Beatham was made to wear a paper body suit while detectives waited to hear word from the pathologist on the cause of death. The pathologist determined the cause was natural, and that she had died from a rare but severe adverse reaction to medication called Stevens Johnson Syndrome, or SJS.

SJS, and its most severe form, toxic epidermal necrolysis, or TEN, has a reported incidence of about one case per million people each year. It affects people of all ages, including young children, and is most often caused by common medication such as ibuprofen, antibiotics and anti-seizure medication, to name a few. Defined as a hypersensitivity disorder, SJS/TEN affects the skin and mucous membranes, causing the skin to blister and peel away in sheets. Blisters also can form in the mouth or eyes, and can lead to severe eye problems or blindness.

Armstrong’s parents, Ted and Angie, were distraught about their daughter’s death and puzzled why police would think their daughter’s boyfriend was to blame. At the time of their daughter’s death, they were dealing with the sudden serious illness of their son, Chris, who as hospitalized at the time with epilepsy.

“It hasn’t yet hit us fully,” Mrs. Armstrong said of her daughter’s death.

SOURCE: Stevens Johnson Syndrome › Australian woman dies from adverse reaction to medication

Rachel was looking for others like her – people who had taken common medication, like ibuprofen from the super market, and had a severe adverse reaction called Stevens Johnson Syndrome (SJS) or its most severe form toxic epidermal necrolysis (TEN).

She shared her struggle in the videos and in an interview with me – how her skin blistered and peeled off in sheets, how sores blossomed on and in her mouth and her eyes became bloodshot. “Dracula eyes,” she called it. It was her gynecologist – who also serves as her primary care physician – who diagnosed her with SJS. He sent her immediately to the emergency room.

“They (emergency room staff) kept asking me, ‘What did you take? What did you take?’ and I kept saying, ‘nothing,’” she says, because the last medication she had taken – the ibuprofen for a headache – was two weeks earlier.

The next few days were a blur. Rachel was admitted to the hospital on a Friday, and by Sunday doctors were putting her into a drug-induced coma to shield her from the pain and heal her battered body. Ninety-seven percent of her skin had peeled away. She stayed in the coma for six weeks. What she remembers of that time are vivid dreams and nightmares. Rachel’s recovery was slow and arduous. The videos, it seems, were a way for her to cope, to fully understand the battle she had fought. Some don’t win that battle. Knowing that, she says, both frightens and humbles her.

Nearly five months after she fell ill, Rachel’s life is beginning to return to normal. She celebrated Christmas with her family. “I almost wasn’t here on Christmas,” she says. Last week she returned to her job full time. She is no longer in rehab. (She stopped a week and a half early, she says, because insurance stopped paying.) “My wounds have healed,” she says, though the condition has caused macular degeneration. “I may lose my eyesight.” She’ll have to follow a rigorous eye hydration regime to keep her eyes as healthy as possible.

Most importantly, as she heals, Rachel is trying not to clutter her mind with negative thoughts – like, what if the condition returns. “I hear this is normal – for me to feel this way,” she says.

Rachel’s desire is to develop a community on YouTube for people affected by SJS and TEN. If you or a member of your family has been touched by SJS or TEN, Rachel encourages you to contact her through her YouTube channel.

SOURCE: Stevens Johnson Syndrome › Life slowly returns to normal for SJS survivor, SpunkyRachel

The Stevens Johnson Syndrome Foundation was founded as a community for adults and children affected by the condition. It is a 501(c)3 nonprofit organization dedicated to promoting public awareness to adverse drug reactions. Tax-deductible donations help power the organizations Web site and enable its members to raise awareness of the condition and provide much needed support to others suffering from SJS and TEN.

One of the organization’s outreach projects aims to provide comfort to the tiniest sufferers of SJS and TEN. For a tax-deductible donation of $30, the organization provides a plush bear and blanket to a child with SJS and TEN.

For more information about this important cause visit the SJS Foundation’s Donation Center. To participate in the bear & blanket program, send your $30 check payable to the Stevens Johnson Syndrome Foundation, P.O. Box 350333
 Westminster, CO 80035-0333,
 USA. Please include “SJS Kids Comfort” in the memo section. Other donation opportunities also are detailed on the Web site.

SOURCE: Stevens Johnson Syndrome › Bear and blanket program gives comfort to kids with SJS

But the blisters got worse. They spread down her throat and little Julie was unable to drink her bottle because of the pain. Jean rushed her daughter to the hospital, where doctors continued to administered the phenobarbatol for her seizures. But Julie’s health continued to decline. Four days later the little girl’s lungs collapsed and her skin began coming off in sheets. That’s when a nurse realized what was going on. “This is Stevens Johnson Syndrome (SJS),” she said. Jean was relieved to have a diagnosis, but the doctor said, “This is extremely serious. She could die.”

Jean shared her story earlier this year to Voice America’s Disability Matters radio show with host Joyce A. Bender. Jean appeared on the show with SJS survivor Elizabeth Boxer and her father Mark.

When Jean’s daughter was diagnosed with SJS, she was told the adverse reaction to medication such as anti-seizure medication, ibuprofens and antibiotics was so rare that she would probably never hear of it again. But Jean refused to believe that the illness that threatened her daughter’s life and left her blind in one eye and visually impaired in the other – a condition caused by common medications – was as rare as doctors described. She made it her mission to found a community where others touched by SJS could share their stories. Thus, the Stevens Johnson Syndrome Foundation was established.

Shortly after founding the organization, Jean discovered that several people were suffering from the disease. Many, like Jean, were looking for answers as to how medicine designed to help can actually cause more harm.

“This is wrong,” announced Jean on the radio program, where she took questions from listeners. “(SJS) is not rare. What’s rare is having it reported to the FDA.”

SOURCE: Stevens Johnson Syndrome › SJS Foundation established to give answers to those with SJS

But earlier this week, she was chosen along with several other sick children to travel to Lapland, Scotland, and visit with Santa Claus, according to The Edinburgh (Scotland) Paper, Evening News.

Each year the Edinburgh charity FACE organizes the trip to the snowy village, to Santa’s home, for children with life threatening illnesses. The guests of honor had struggled much this year and relished in the opportunity to meet face-to-face with Santa. Some of the children suffered from cancer, others from spinal cord injuries. Like Kacey, all were deeply moved to have the opportunity.

“How will I know what the elves are doing if I can’t see them?” Kacey whispered to the Edinburgh Royal Hospital for Sick Children nurse who traveled with her. “Don’t worry,” the nurse answered, “I’ll tell you.”

SJS and TEN are rare but serious conditions that most often occurs as an adverse reaction to medications such as ibuprofen, anti-seizure medications and antibiotics. It affects people of all ages and genders, including children and infants. Defined as a hypersensitivity disorder, it causes the skin to blister and peel away. Mucus membranes also can be affected, causing lesions in the mouth or eyes. When the condition affects the eyes, ocular problems can occur. These can include conjunctivitis, scarring of the conjunctiva, inflammation inside the eye (iritis), corneal blisters and perforation, which can potentially lead to permanent vision loss.

SOURCE: Stevens Johnson Syndrome › Child with TEN gets a special trip to Santa’s snowy village

SJS is a rare but life-threatening disorder usually caused by an adverse reaction to common medication such as antibiotics, anti-seizure medication and ibuprofen. Its most serious form is toxic epidermal necrolysis (TEN). SJS and TEN are defined as hypersensitivity disorders that affect the skin and mucous membranes. The disorder is a severe expression of a simple rash that can blister over and cause the skin to peel off. Blisters also can form on the eyes and mouth, causing  ocular problems, dehydration, infection and even death.

Rachel sounds somber in one of her first videos. She is bald and her dark skin is marked by large patches of white. She lost 97 percent of her skin and her hair. She hopes her pigment will return and her hair will grow back. But after coming out of a six-week-long, drug-induced coma and surviving the extreme pain of the disorder, she realizes she is lucky to be alive.

“This has been an absolute horror show for me,” says Rachel.

The horror began when she took ibuprofen that she had purchased from a grocery store. She became ill and soon was admitted to the hospital where she was diagnosed with TEN, the worse form of SJS. “I’ve taken ibuprofen for many years and, God, nothing like this has ever happened,” she says. Now gradually recovering, she hopes to find friendship and bonding with others through YouTube.

This later video shows an upbeat Rachel. She is sporting a wig, which she calls her “fantasy hair” – the short hairdo she always wanted but was too afraid to do. Her mother had told her that she needed to explain what the disorder is, and here she does. She tells us that she would love to form the SJS YouTube community. She would love to talk with others who have suffered the way she has, share stories about recovery and pain management.

“I really hope that I find that somebody,” she says.

SOURCE: Stevens Johnson Syndrome › Woman recovering from TEN hopes to form YouTube community

In January 1998, Santoso came down with a fever and sore eyes. He went to two different doctors and received medication for his condition, but he became increasingly sicker. “Suddenly all my skin blistered. My eyes became blind,” he says as disturbing photos of him flash on the video. Santoso was admitted to the hospital and diagnosed with Stevens Johnson Syndrome (SJS).

SJS is a rare but life-threatening condition that usually occurs from a reaction to common medications, such as antibiotics, ibuprofen or anti-seizure drugs. SJS often begins with a rash that becomes blistered and peels away. It affects the skin and mucous membranes, causing blisters to form in the mouth and eyes. The most severe form of SJS is toxic epidermal necrolysis (TEN).

During his battle with SJS, Santoso says he “humbled myself to God.” He vowed to serve God if he would healed. Three weeks later, Santoso was able to leave the hospital. Keeping his promise, Santoso became a reverend.

But Santoso still suffers from the ill effects of the disease he had a decade ago. “My eyes are very disabled,” he says. “I live with blur eyes.” He says he needs to put “tears” in his eyes every five minutes. He goes through a bottle of eye drops a day.

Yet, he is happy to be alive. “I am thankful to the Lord because he has given the healing to me,” he says. “And I hope my testimony can help you.”

SOURCE: Stevens Johnson Syndrome › Man shares SJS struggle on YouTube video

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

TOUCH IS THE SENSE OF LOVE
I’m scared,
 You hold me.
I cry,
 You hold me close.
I’m hurt,
 You hold me closer.
Touch is the sense of love.

It’s hard to imagine such a beautiful and beaming girl healthy one minute and hanging in the balance of life the next. Her struggle is laid out in a Web site her parents set up to follow her progress as she recovered from the severe reaction to medication. Photographs and poems written by Kaitlyn offer an insight into the battles she fought and the appreciation she had for those who stood by her:

FAITHFUL FATHER
Faithful father,
Tall, brave and strong.
Faithful father
To him I belong.
It was then he cried,
when I almost died.
Faithful father
My life I depend on you.

Kaitlyn’s family’s nightmare began April 5, 2002, when Kaitlyn began showing signs of the flu. She was treated at an urgent care center the next morning and by Sunday she had a severe rash and high fever. She was admitted to the hospital and her parents watched as their daughter’s health deteriorated.

The diagnosis – toxic epidermal necrolysis (TEN), a severe form of SJS, a rare but life threatening hypersensitivity disorder affecting skin and mucous membranes. The disorder affects all ages and genders, including the pediatric population. It is most often caused by a reaction to medications such as non-steroidal anti-inflammatory agents like ibuprofen and some antibiotics. Kaitlyn’s condition was caused by a common over-the-counter medication, Children’s Motrin.

Kaitlyn passed away on December 17, 2003, due to complications from SJS/TEN, but the Web site has helped those of us who have never met her understand just how extraordinary she was. With hope, maybe her story will prevent another precious child from suffering.

SOURCE: Stevens Johnson Syndrome › Young girl’s struggle with SJS laid out on Web site

The Johnson family claimed that Children’s Motrin caused their daughter’s skin to break out in excruciatingly painful rashes and blisters after giving her three doses of the over-the-counter medication. Her eyes blistered over and she was blinded. Sabrina, who was 6 at the time, was diagnosed with Stevens Johnson Syndrome (SJS), which is an extreme adverse reaction to some drugs, including ibuprofen. The active ingredient in Children’s Motrin is ibuprofen.

The family claims that the drug maker did not provide adequate warning of the possible reaction on its medication label. A jury found that the medication’s labeling, which advises consumers to notify a doctor if the child’s symptoms change, was adequate.

“The FDA is not doing anything for us. They are taking care of the prescription drug people. They’re taking care of their billions of dollars. And the few children that die … Oh well,” Joan said in the news report.

The Johnson family is appealing the case. At least nine other lawsuits have been filed by others who have suffered from SJS after taking the medication.

SOURCE: Stevens Johnson Syndrome › Family appeals case against makers of Children’s Motrin

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

According to mediafact.com, other medications have been linked to Stevens Johnson syndrome including Bextra, Celebrex and Daypro, as well as over-the-counter pain relievers such as Motion, Ibuprofen, Children’s Motrin and Advil.

One of the main issues with Stevens Johnson syndrome is the lack of awareness from the patients that are at risk and the doctors that prescribe the medication. In a 2007 press release from SmartBrief.com, Governor Bill Ritter, Jr., of Colorado, along with the Stevens Johnson Syndrome Foundation, recognized August 2007 as the designated SJS Awareness month. Joining Colorado in recognizing this month were Arizona, Alabama, Connecticut and Tennessee.

According to the article, Stevens Johnson Syndrome affects more than two million Americans each year and has resulted in more than 140,000 deaths.

When prescribed a new medication, or even taking over-the-counter medication, educate yourself on Stevens Johnson Syndrome so you can identify the symptoms at the earliest possible stage.

SOURCE: Stevens Johnson Syndrome › Drug reactions bring awareness to Stevens Johnson Syndrome