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

Thanks to medical innovations, Jenny, who lives in Dublin, underwent surgery a month ago to restore her sight by inserting an artificial cornea in her right eye. The woman was doubtful but hopeful. Doctors had closed a flap of skin over the cornea as she healed from surgery. Last week they removed the skin. “What a shock,” Jenny said. “I just can’t believe it actually happened… it’s all my dreams together, but at the same time I wasn’t hoping for it, you know. I was afraid to.”

The Royal Victoria Eye and Ear Hospital in Dublin, Ireland performed the surgery known as Boston keratoprosthesis. The procedure is rare in Ireland; only about 13 of the procedures have been performed there. Doctors said Jenny’s case was rare because she had been without vision for so long.

Thanks to the surgery, Jenny was able to read numbers and letters for the first time in 46 years. But most remarkably, she was finally able to see the faces of her husband and children.

Source:
Irish Times

SOURCE: Stevens Johnson Syndrome › SJS victim’s sight restored after 46 years

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

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

TEN is the most severe form of Stevens Johnson Syndrome (SJS), a life-threatening hypersensitivity disorder that presents with a rash on the skin that then blisters over, causing the skin to fall off in sheets. SJS/TEN also affects the mucus membranes causing blisters in the mouth and on the eyes. The fatality rate of those with TEN approaches 40 percent.

Though she miraculously recovered, Judy was told that by doctors she would likely have lingering eye problems from the severe scaring. She learned to live with the minimal eye pain, but as each of her three children were born, her immune system seemed to go into overdrive, according to doctors, attacking the cells in her eyes and deteriorating her vision. According to her story in Frederick News Post, as the years progressed, Judy’s eyesight became worse and worse until she could no longer see the faces of her children.

Doctor’s treated Judy’s chronically dry, burning and painful eyes with steroids, but she was still unable to see very well and had become unable to tolerate light or wind. Judy sought the help of specialists, tried immunosuppressant drugs and even chemotherapy, but nothing seemed to help. Doctors advised she learn Braille and get a seeing eye dog, as it was likely her vision would only get worse.

And then Judy met with specialists at the Cincinnati Eye Institute and underwent a stem-cell transplant. It restored her vision only minimally, but doctors and Judy didn’t give up hope. Several surgeries to repair a ruptured cornea and remove cataracts finally resulted in restored vision in one eye. For the first time ever, she was able to see your youngest daughter’s face.

While more surgeries are anticipated on her other eye, and there are no guarantees her vision won’t deteriorate again, Judy says she is thankful for the vision she does have and vows to maintain a positive outlook on the future.

SOURCE: Stevens Johnson Syndrome › Woman’s sight restored after TEN

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

The latest supermarket to jump on the free antibiotics bandwagon is Genuardi’s in Montgomery County, and the public is all ears. The supermarket says it is giving away the nine antibiotics that are most common and frequently prescribed during the winter months. To get the free drugs at Genuardi’s, customers just need a prescription and a Genuardi’s pharmacy card.

And customers are hunger for the free meds, calling their doctors and pharmacies and asking for them.

Antibiotics are prescribed by doctors to treat infection. The meds do not treat viruses, the most common ailment during winter months. Some health experts fear that overuse of antibiotics has made people more resistant to antibiotics, making it more difficult for them to be successfully treated.

But there are other, more serious risks to antibiotics, says one local doctor. “For the occasional patient who gets a serious side effect, it can be life threatening,” says Dr. Thomas Fekete, an infectious disease specialist at Temple University Hospital.

One serious side effect that can occur while taking antibiotics is Stevens Johnson Syndrome, or SJS. SJS is a severe adverse reaction to medication that presents as a rash on the skin that blisters over and causes the skin to peel off in sheets. The mucus membranes also can be involved, causing blisters on the eyes and mouth. Infection, dehydration, blindness and death can occur.

Genuardi’s management says it did consider all angles of the free antibiotics offer, but decided to leave their trust in the doctors.

SOURCE: Stevens Johnson Syndrome › Caution advised with free antibiotics offer

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

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

Modafinil (Provigil) is approved by the FDA to treat narcolepsy and excessive daytime sleepiness associated with obstructive sleep apnea. Modafinil (Provigil) also has been shown effective in the treatment of depression, cocaine addition, Parkinson’s Disease and schizophrenia, though the FDA has not approved the drug for those conditions. It also was thought to be an effective treatment for Attention-Deficit Hyperactivity Disorder (ADHD), however in 2006 it was rejected by the FDA for use by children for ADHD. Cephalon now discourages the drug’s use in children for any purpose.

Since December 1998, when Modafini (Provigil) was introduced to the market until January 30, 2007, seven cases of seven cases of severe cutaneous adverse reactions to the medicine were reported to the FDA. Those cases included SJS and its more severe form, toxic epidermal necrolysis (TEN).

SJS and TEN has a reported incidence rate of about one case per million people each year. It is most often caused by an adverse reaction to medication. Medications that have been linked to SJS and TEN include NSAIDS (non-steroidal anti-inflamatory agents), anti-seizure medications and some antibiotics.

SOURCE: Stevens Johnson Syndrome › Stimulant drug added to list of meds that can cause SJS/TEN

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

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

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