Woman recovering from TEN hopes to form YouTube community
December 23rd, 2008 by Jennifer Walker-Journey
“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).
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.