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The International Serious Adverse Events Consortium (SAEC) is a global, nonprofit partnership between leading pharmaceutical companies, the FDA and academic institutions. It was organized just more than a year ago. Among its goals, the consortium hopes to identify genetic markers that predict which individuals are at risk for drug-related serious adverse reactions, also known as SAEs.
Gary Beatham had been blamed for her death. He couldn’t understand why.
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.
Rachel, known as SpunkyRachel online, says she was caught off guard by friends – both old and new – who had seen her videos on YouTube. She had posted several of them these past few months – some with her bald head uncovered and her dark skin blotched with white patches.
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).
Stevens Johnson Syndrome (SJS) and its most serious form Toxic Epidermal Necrolysis (TEN) are serious, life threatening conditions caused by common medication. They are defined as hypersensitivity disorders that affect the skin and mucous membranes, causing the top layer of skin to peel off in sheets and painful blisters to form on the eyes and mouth. It affects people of all ages and genders. Infants and children are not exempt. The drugs most commonly associated with SJS and TEN in children are ibuprofen-based medications such as Children’s Motrin. Other drugs that can cause SJS and TEN include anti-seizure medications and antibiotics.
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.
It was bad enough that Jean McCrawley’s infant daughter Julie was diagnosed with epilepsy, but two weeks after she was prescribed phenobarbatol to treat her seizures, she woke up with a swollen eyes and a high fever. Jean took her daughter to the doctor who discovered blisters forming on the little girl’s shoulders and mouth. He diagnosed her with chicken pox.
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.”
“I was a fairly attractive woman before. Now I’m just butt-ass ugly,” says Rachel, known as SpunkyRachel on YouTube. She says this on one of the videos she has posted to the site. She hopes they will spur a YouTube support group for others like her, who have lived through the pain and are recovering from Stevens Johnson Syndrome (SJS).
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Rev. Samuel Irwan Santoso of Indonesia speaks with a heavy accent, but the meaning of his words are clear – he has no tears. “I have no tears for five years,” he says on his YouTube video. “You must be happy because you have tears. You can cry.”
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).
Last month when Kim Oake was bitten by a feral cat while working as an animal control officer in Canada, she was given Clavulin, a common antibiotic to ward off infection. The antibiotic nearly killed her. Her family wants to know why people aren’t told about the serious, life-threatening reaction that could occur by taking common drugs, according to CBC News.
Kim Oake, the Canadian single mother of two who became ill with toxic epidermal necrolysis (TEN) last month, was admitted to the hospital and put into a drug-induced coma to help battle infection, is going home, according to her sister Lisa, who keeps regular updates on the Kim Oake Support Group Facebook page.
“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.
“Each day is a victory,” writes Lisa Oakes, sister of Kim Oakes, the Canadian animal control officer who took antibiotics for a cat bite last month and ended up in the hospital struggling for life. Kim had suffered a rare adverse reaction to a commonly prescribed antibiotic which resulted in toxic epidermal necrolysis (TEN), a severe form of Steven Johnson Syndrome (SJS). Since we first told you about Kim, the family has formed the Kim Oake Support Group on Facebook to provide updates on Kim’s struggle and to educate others about the debilitating condition usually caused by over-the-counter medications such as ibuprofen, and antibiotics.
