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

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

GIST are rare tumors that usually appear in the stomach or small intestine. They tend to be resistant to chemotherapy, and are considered aggressive cancers. Re-occurrences of GIST tumors tend to be more aggressive and are associated with lower survival rates.

The new treatment, Glivec, is the only post-surgery treatment that has been shown to delay the return of this deadly cancer. In studies conducted, Glivec was proven effective in more than 9 out of 10 patients who received the medication based on a 14-month follow up. Data sponsored by National Cancer Institute showed that 91.6 percent of patients on Glivec therapy remained cancer-free after a 14-month follow up compared to 80.2 percent of patients who took a placebo.

Glivec also is approved for the treatment of Philadelphia chromosome-positive myeloid leukemia, Kit-positive gastrointestinal stomal tumors which cannot be surgically removed or have metastasized, and other rare diseases. Regulatory reviews are currently underway in the European Union and Switzerland.

SJS has been listed as a rare adverse reaction to Glivec. SJS is a rare but life-threatening reaction to medication. It begins with a rash on the skin that blisters over, causing the skin to peel away in sheets. Blisters can also form on the eyes and mouth, leading to dehydration, infections and serious eye problems. The condition can be fatal.

SOURCE: Stevens Johnson Syndrome › Glivec proven effective in treatment of GIST, but linked to 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

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

Kim had suffered a severe adverse reaction to a common antibiotic she received after being bitten by a feral cat. She was diagnosed with toxic epidermal necrolysis (TEN), the most severe form of Stevens Johnson Syndrome (SJS).

“I knew something was wrong when I started taking the antibiotic,” Kim says. “I felt different immediately.” She had taken other antibiotics before and never had any problems. But this drug made her ill. Just days after beginning the antibiotic, she stopped the medication. But then her fever spiked and her head began pounding. Her body broke out in a rash.

Her condition continued to deteriorate. Kim was admitted to the hospital and received morphine for the pain. The doctors and nurses were baffled. It wasn’t until a wound specialist checked her that she was finally diagnosed with SJS/TEN.

Once diagnosed, doctors were able to treat her, but the struggle was only beginning. Kim was put into a drug-induced coma for 15 days. She remembers strange dreams, like wanting to fall into a deep sleep but her sister, Lisa, kept throwing pixie dust on her, keeping her from drifting off. “She may have saved my life,” she says with a laugh.

Kim was determined to overcome SJS/TEN, and miraculously, was able to go home before Christmas. She spent the day with her children. “I was just so glad to be home,” she says.

Kim began physiotherapy last week – impressing her physiologist with her strength and range of motion. Movement is hard, she says, because the new skin is taut and hurts when stretched. She knows recovery is a long road, but she looks forward to going back to work as an animal control officer.

“It’s been a wild ride,” she says. “I’m glad that part is over.”

SOURCE: Stevens Johnson Syndrome › Kim continues to recover from dangerous bout with TEN

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

Before being admitted to the hospital, Baylee was thought to be suffering from a combination of strep throat; hand, foot and mouth disease; and erythema multiforme (EM). EM is an acute, self-limiting inflammatory skin eruption. It often affects the mouth, eyes and other moist surfaces. One category of EM, known as EM major, is Stevens Johnson Syndrome (SJS). SJS often appears following fever, malaise, cough and sore throat. A skin biopsy can confirm SJS.

Unlike with SJS, there is no single test to detect KD. Doctors usually diagnose it by looking at the symptoms expressed and ruling out other conditions. Symptoms usually include a fever lasting five or more days; redness in both eyes; changes around the lips, tongue or mouth; swelling, discoloration or peeling in the fingers and toes; a rash in the trunk or genital area; large, swollen lymph node in the neck; and red or swollen palms of the ands and soles of the feet.

SJS is most often caused by an adverse reaction to medication; the cause of KD is still unknown. If left untreated, KD can cause inflammation in the coronary arteries as well as the walls of the small and medium sized arteries throughout the body. Doctors say Baylee’s arteries were affected and he received treatment, according to E! Online. Baylee was released from the hospital just days before Christmas and will be monitored carefully by pediatric cardiologists over the next 6-8 weeks.

SOURCE: Stevens Johnson Syndrome › Singer’s son diagnosed with rare disease similar to 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

Chung Wen-hung with Chang Gung Memorial Hospital in Taipei, has discovered that granulysin, a naturally occurring substance in the human body, can attack foreign substances or organisms. This discovery may lead to a therapeutic target for further development of an effective treatment for severe immune-mediated disorders that currently have no satisfactory treatment, according to the report. The report is published in last week’s edition of the biomedical research journal Nature Medicine.

SJS accounts for about half of the cases handled by the Taiwan Drug Relief Foundation. It is a rare and sometimes fatal skin disorder that often is caused by medication. SJS and its more severe form, toxic epidermal necrolysis (TEN), are characterized by painful blistering of the skin and skin lesions.

As the condition evolves and skin cells begin to die, skin can literally slough off. Treatment usually focuses on eliminating the underlying cause, if possible, and controlling the symptoms. Recovery can take several weeks to several months.

Chung’s research also appeared in Nature Medicine four years ago when he discovered a link between carbamazepine, an anti-seizure medicine, and patients with SJS. His discovery prompted the Taiwan Department of Health as well as the U.S. Food and Drug Administration to alert healthcare providers of the possible link and recommend genetic screening for the gene before prescribing the medication.

SOURCE: Stevens Johnson Syndrome › Chinese doctor’s discovery may lead to treatment for SJS