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Mystery Diagnosis usually ends each episode with a solid diagnosis and summary on the patient’s prognosis. But the Baby Julie story had no resolution, which prompted viewers to research symptoms and make their own diagnosis, all in an effort to stop Baby Julie’s suffering. “Stevens Johnson Syndrome,” one YouTube viewer commented.

“This is Jean McCawley. Julie is my daughter, and yes, it was Stevens Johnson Syndrome,” responded Baby Julie’s mother. The story actually unfolded more than a decade ago and baffled doctors for months before the little girl was correctly diagnosed. “Julie was actually saved by a nurse. She went above and beyond to convince the doctors that they had misdiagnosed her,” Jean said. Her daughter, however, still suffers from side effects from the condition, including blindness.

Stevens Johnson Syndrome, or SJS, is a life threatening allergic reaction to medication that presents with a rash or blisters on the skin. More than 2,000 medications have been linked to SJS.

Baby Julie’s story has prompted thousands of views on YouTube, and coincided with Stevens Johnson Syndrome Awareness Month this month. Jean urges viewers to find out more about SJS before someone they love becomes affected. For more information, visit the Stevens Johnson Syndrome Foundation.

SOURCE: Stevens Johnson Syndrome › Baby Julie mystery kicks off SJS awareness month

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“Seemed like a lifetime ago,” she comments on her video titled “Getting on, moving on.” Photos flash on the screen of a lovely woman with flowing dark hair. “A few days before Stevens Johnson Syndrome turned my world around,” she writes under a picture of herself, a vision of health. The following photos show the stark reality. SJS tore through her body, blistering her skin and internal organs, sending her to the hospital where she was placed in a drug-induced coma for six weeks. The fact that she survived is a miracle.

SJS is a rare reaction to medication. More than 2,000 drugs have been linked to SJS, most commonly ibuprofen, antibiotics, anti-viral drugs and anti-convulsants. The condition begins as a rash that blisters over causing the skin to peel off in sheets. The eyes and internal organs can also be affected, causing dangerous dehydration, serious problems with the eyes, and life threatening infections.

“Once I was a victim,” Rachel writes. “Then there came a time when I began to thrive.” There is no denying that Rachel has been through a long recovery. The scars still show on the patches of white on her dark skin, but her smile shines brighter. “And now,” she says, “I have finally begun to flourish.”

SOURCE: Stevens Johnson Syndrome › SpunkyRachel: ‘I have finally begun to flourish’

SJS is a severe adverse reaction to medication. For Rachel, it was two doses of ibuprofen purchased from a grocery store. Two weeks later, her body reacted violently, developing rashes on her skin that blistered over and peeled off. She was admitted to the hospital and placed in a drug-induced coma while doctors worked to save her life. Her peeled body resembled a burn victim’s and she was prone to infection and other serious problems. After her months-long recovery, Rachel returned home and made her first video.

The road of recovery has not been easy. Rachel talks about her bout with depression and the gradual improvement of her skin and growth of hair. In some videos she is mad or sad. In others, she sounds upbeat. In her most recent video, Rachel has just returned from vacation and the trip sounds therapeutic.

“I’m hoping for the best,” she says.

She may think her videos fall on deaf ears, but a recent commenter made her realize just how important her message is to others who struggle with the condition.

“I wasn’t going to make another video until I saw this girl Shawnee’s video. And she told me I was an inspiration to her,” she says. “So I’m going to continue making videos until I feel as though it has been enough.”

Watch Rachel’s latest video below:

SOURCE: Stevens Johnson Syndrome › Rachel continues on road to recovery from SJS

SJS is a rare but life-threatening disorder usually caused by an adverse reaction to common medication such as antibiotics, anti-seizure medication and ibuprofen. SJS is a hypersensitivity disorder that presents with a rash on the skin that blisters over causing the skin to peel off in sheets. Mucus membranes also can be affected, with blisters developing on the eyes and in the mouth which can lead to ocular problems, dehydration, infection and even death.

Rachel’s videos show her gradual physical progress. What we see is that surviving the condition is the first hurdle. The next is the physical recovery – as the skin heals and the hair grows back. The emotional recovery can take longer, and Rachel shares that promise and pain in her last two videos from February 2, and April 9.

Rachel tells us that she feels physically stronger every day. She is in therapy now to deal with the depression that makes her “fight the urge every day not to cry.” She has noticed those closest to her drift away or change the way they treat her. One blessing is a friend she has found who suffered from SJS five years ago. The friend shared a picture of herself – completely physically healed from the peeled-off skin and hairlessness. It gives Rachel hope that she, too, will look like her old self again.

Her video testimonials are honest and real, and not only serve as a healing mechanism for her, but a way for her to help others. The videos, she says, “may benefit somebody in the future.”

SOURCE: Stevens Johnson Syndrome › SpunkyRachel discusses physical, emotional healing from SJS

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

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

SJS is a rare but life-threatening disorder usually caused by an adverse reaction to common medication such as antibiotics, anti-seizure medication and ibuprofen. Its most serious form is toxic epidermal necrolysis (TEN). SJS and TEN are defined as hypersensitivity disorders that affect the skin and mucous membranes. The disorder is a severe expression of a simple rash that can blister over and cause the skin to peel off. Blisters also can form on the eyes and mouth, causing  ocular problems, dehydration, infection and even death.

Rachel sounds somber in one of her first videos. She is bald and her dark skin is marked by large patches of white. She lost 97 percent of her skin and her hair. She hopes her pigment will return and her hair will grow back. But after coming out of a six-week-long, drug-induced coma and surviving the extreme pain of the disorder, she realizes she is lucky to be alive.

“This has been an absolute horror show for me,” says Rachel.

The horror began when she took ibuprofen that she had purchased from a grocery store. She became ill and soon was admitted to the hospital where she was diagnosed with TEN, the worse form of SJS. “I’ve taken ibuprofen for many years and, God, nothing like this has ever happened,” she says. Now gradually recovering, she hopes to find friendship and bonding with others through YouTube.

This later video shows an upbeat Rachel. She is sporting a wig, which she calls her “fantasy hair” – the short hairdo she always wanted but was too afraid to do. Her mother had told her that she needed to explain what the disorder is, and here she does. She tells us that she would love to form the SJS YouTube community. She would love to talk with others who have suffered the way she has, share stories about recovery and pain management.

“I really hope that I find that somebody,” she says.

SOURCE: Stevens Johnson Syndrome › Woman recovering from TEN hopes to form YouTube community

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).

SJS is a rare but life-threatening condition that usually occurs from a reaction to common medications, such as antibiotics, ibuprofen or anti-seizure drugs. SJS often begins with a rash that becomes blistered and peels away. It affects the skin and mucous membranes, causing blisters to form in the mouth and eyes. The most severe form of SJS is toxic epidermal necrolysis (TEN).

During his battle with SJS, Santoso says he “humbled myself to God.” He vowed to serve God if he would healed. Three weeks later, Santoso was able to leave the hospital. Keeping his promise, Santoso became a reverend.

But Santoso still suffers from the ill effects of the disease he had a decade ago. “My eyes are very disabled,” he says. “I live with blur eyes.” He says he needs to put “tears” in his eyes every five minutes. He goes through a bottle of eye drops a day.

Yet, he is happy to be alive. “I am thankful to the Lord because he has given the healing to me,” he says. “And I hope my testimony can help you.”

SOURCE: Stevens Johnson Syndrome › Man shares SJS struggle on YouTube video