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

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

The study is the largest conducted to-date focusing on Latino patients with the hepatitis C virus. The virus is a blood-borne infectious disease of the liver that can lead to cirrhosis, liver cancer and the need for liver transplants. Hepatitis C is reported to affect Latino patients differently than non-Latino patients. The Latino population is the largest-growing minority in the United States and has a higher prevalence of hepatitis C. The virus also has a faster progression and a much higher mortality among Latinos than non-Latinos.

PEGASYS is produced by New Jersey-based Hoffman-La Roche Inc. It can be used alone or in combination with COPEGUS, for the treatment of adults with chronic hepatitis C who have compensated liver disease. The medication was found most effective in patients with compensated liver disease and histological evidence of cirrhosis.

However, erythema multiforme major, also known as SJS, was reported among the serious adverse events that occurred during post-approval use of PEGASYS therapy. SJS is a rare but life-threatening reaction to medication that begins as a rash that blisters over, causing the skin to peel off in sheets. It also affects the mucus membranes, such as eyes, mouth and vagina, which can blister over and lead to dehydration, infection and serious eye problems such as blindness. More than 200 medications have been linked to SJS.

If you experience a rash or blistering while taking PEGASYS or any other medication, healthcare officials advise you contact your doctor and go to the emergency room.

SOURCE: Stevens Johnson Syndrome › Hepatitis C treatment proven effective 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

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

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

The eyes are especially vulnerable. Typical ocular problems associated with SJS and TEN can include conjunctivitis, scarring of the conjunctiva, inflammation inside the eye (iritis), corneal blisters and perforation, which can potentially lead to permanent vision loss. Therapy for ocular problems often includes ocular lubrication with artificial tears and ointments. Plus, individuals must be on constant watch for various ocular infections. Corneal transplants, limbal stem cell transplantations or artificial corneal procedures maybe considered if there is lasting damage.

One company is helping ease the sting of recovery for people who have had SJS and TEN and stuffer from lingering eye problems. Eyeeco, a distributor of eye hydration products, offers 15 percent discounts on its products to those who have had SJS or TEN. All users need to do is type “SJS” in the promotional code field and their discount will show up at checkout. Eyeeco’s Tranquileyes eye hydrating therapy, which includes drops and goggles, is specially designed to naturally hydrate dry, tired eyes, reduce eye puffiness and create complete darkness to enhance relaxation and sleep. Chronic Dry Eye Kits cost between $49 and $59.

SOURCE: Stevens Johnson Syndrome › Company offers discount on eye products to SJS/TEN survivors