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

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

Detrol is just one of the medications that has been added to the Food and Drug Administration (FDA) quarterly report on treatments identified as a potential safety risk to patients. According to the report, Detrol, also known as Tolterodine Tartrate, is being evaluated by the agency after reports of patients diagnosed with Stevens Johnson Syndrome (SJS), a rare but life-threatening skin condition, after taking the medication.

SJS and its most severe form, toxic epidermal necrolysis (TEN), are severe adverse reactions to medications. More than 200 medications have been linked to the condition. Those who suffer from SJS or TEN experience rashes that blister over and cause the skin to peel off in sheets. Blisters can also form on the eyes, inside the mouth and on internal organs, causing ocular problems, dehydration, infection and sometimes death.

Other medications listed in the FDA’s quarterly report and investigated for a possible link to skin reactions include hydrochlorothiazide in combination with other products, sleep disorder medications modafinil (Provigil) and Armodafinil (Nuvigil), and smoking cessation drug Chantix.

The FDA reports that it is continuing to evaluate these issues to determine if there is need for regulatory action. In the interim, the FDA emphasizes that the listing of a drug and a potential safety issue does not mean that the medicines should not be prescribed nor that patients taking those drugs should stop taking the medication. Patients with questions about their medication should contact their health care provider.

Source: FDA

SOURCE: Stevens Johnson Syndrome › New drugs investigated for possible skin reactions

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

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

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 as a rash that blisters over causing the skin to peel off in sheets and leaving the body prone to infection. Sara’s mother says half of her daughter’s skin was affected. SJS also can affect the mucus membranes, causing blisters to form on the eyes and mouth, leading to serious complications such as blindness and dehydration.

Hospitalized since March 10, Sara still has a long road of recovery ahead of her. During her hospital stay she was put into a drug-induced coma and treated as if she suffered from second-degree burns, according to her mother, Dena Ensley.

Sara will be staying at her uncle’s house where there are plenty of people to keep watch over her. They will administer medication for her pain and drops to her eyes.

“She has pain in her eyes and light sensitivity,” says Dena. The blisters from SJS damaged her corneas and made her vision blurry. Her voice is also very raspy. Despite her progress, her mother says Sara has a hard time looking in the mirror.

Visitors will be kept to just close friends and family, and she will make regular visits to Grand Rapids to visit her doctor until he gives her the “all clear.”

“She’s still sleeping a lot — taking lots and lots of naps,” Dena told the newspaper. “But she’s home.”

SOURCE: Stevens Johnson Syndrome › Michigan girl released from hospital after battle with SJS

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

SJS and TEN are severe adverse reactions to medication that first express as rashes on the skin. The rashes blister over causing the skin to peel away. Mucus membranes in the eyes, mouth and nose also can be affected and cause serious complications such as dehydration, infection and even death. Serious ocular complications may include permanent vision loss from corneal scaring or vascularization.

The study involved 159 patients over an 8-year period who had been diagnosed with SJS and TEN. Seventy-four percent of the group had acute ocular involvement. Patients with TEN had more frequent but not more severe acute ocular involvement. Sixty-three percent had late ocular complications, with dry eye being the most common complication.

The researchers determined that the severity of the acute ocular disease was found to be the only significant predictor of late complications. The authors suggest that all patients with SJS or TEN undergo initial ophthalmologic screening and follow-up during the acute phase of the disease and that prospective follow-up for up to a year may be necessary.

SOURCE: Stevens Johnson Syndrome › Study focuses on eye complications from SJS/TEN

SJS and TEN are serious reactions to medication that present with a rash on the skin that blisters over causing the skin to keep off in sheets. Mucus membranes such as those on the eyes and in the mouth also can blister, leading to life-threatening complications. If signs and symptoms are not quickly recognized and the medication causing the problem not identified and stopped, the reactions can be fatal.

SAEC is a nonprofit organization made up of major pharmaceutical companies and academic institutions focused on research relating to the genetics of drug-induced serious adverse events. Organized 16 months ago, the group’s mission is to develop genetic tests that can identify which patients are more likely to suffer severe adverse reactions to medication. Much of the group’s focus is on SJS/TEN.

The group’s findings were derived by pooling serious skin rash cases and control samples from GlaxoSmithKline plc London, U.K. From that data, researchers identified numerous genetic associations that may increase one’s chances of having a serious skin reaction to medication.

“This consortium has taken a significant step forward by promoting open sharing of drug safety data. This type of cooperation has the potential to lead to more personalized approaches to medicine that can reduce a patient’s risk for experiencing an adverse drug event,” said Janet Woodcock, M.D., director, the FDA’s Center for Drug Evaluation and Research.

The group’s initial research results will be published later this year.

SOURCE: Stevens Johnson Syndrome › SAEC releases first data on serious adverse events caused by drugs

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

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

“I was scared because first I couldn’t talk (because of the blisters in her mouth) and now I was in the hospital not even knowing what was going on,” she said. Among the physicians who examined her was an eye doctor, who knew immediately what she had. He said one of his employees had had the same thing a month earlier. He said, “She has Stevens Johnson Syndrome (SJS),” he said. Hannah quickly wrote down, “What the heck is that?”

“No one could really explain it to me,” she said. “They were taking blood and giving me morphine and drugging me up and they didn’t even know what had made me so sick.”

By the time Hannah was able to go home three weeks later, she learned what caused her SJS – it was a severe adverse reaction to her bipolar medication, trileptal.

Trileptal, also approved for the treatment of epilepsy, recently amended its safety labeling to include a warning of the risk of SJS and its more severe form, toxic epidermal necrolysis (TEN). SJS and TEN are hypersensitivity disorders that begin as a rash that blisters over and causes the skin to peel away. Mucus membranes also can be affected with blisters causing dehydration, infection, blindness and even death.

It has been almost a year since Hannah became ill. She has recovered but the memory of SJS still lingers in her mind. Her skin is almost completely healed, but now she must avoid the many medications that have been associated with SJS and TEN for fear of a relapse. “I can’t take Midol or Advil anymore,” she said. “Now, my mom tells me what to take.”

SOURCE: Stevens Johnson Syndrome › Teenager shares story of serious reaction to medication

Joe was just 4 years old when he died. He contracted meningitis at one week old and eventually was diagnosed with Angelmans Syndrome, a neuro-genetic disorder that can cause developmental delays, seizures and jerky movements. Those with Angelmans Syndrome appear to have a happy, joyful demeanor. Shortly after the diagnosis, Joe was put on Topiramate, an anticonvulsant to control his seizures. But the medication caused a severe adverse reaction called Stevens Johnson Syndrome (SJS).

“We were warned about the usual side effects – loss of appetite, liver problems, etc., but not SJS,” his family writes in the online journal, Joe Way Inspired.

SJS damaged Joe’s organs and left him vulnerable to numerous infections. His body was frail, but his spirit was strong. His family focused on giving Joe the opportunity to live his short life to its fullest, taking him to the beach and letting him play in the water. Last May, he lost his fight.

Four weeks after Joe died, his family launched the Web site memorial. Its focus is to raise money for a children’s hospice in their town of Cornwall.

Last week, Joe’s family launched a series of videos on YouTube. The videos show the spirit of little Joe and the fund raising efforts of others. The Way family alone has raised more than £28,500 as part of the “children’s hospice South west Precious lives appeal.” Others have helped raise funds as well, making the hospice, which will be named Little Harbour, a reality.

Joe won’t be able to reap the benefits of Little Harbour, but his family has seen the plans for the facility. As Joe’s father said in one video, speaking to a church congregation, “Still, in his own way, he is inspiring people even though he is not here.

SOURCE: Stevens Johnson Syndrome › SJS victim’s family helps raise funds for children’s hospice

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

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