Stevens Johnson Syndrome Patient Stories
'What's a Foot for a Life?'
Imagine for a moment that an unknown medical problem causes you to lose consciousness; when you wake, you're missing a limb. How would you react? The following account details the story of a 23-year old woman from Brisbane, Australia and her reaction to this scenario.
In 2001 and eighteen at the time, the woman in question was studying for a political science degree in Brisbane. After complaining of a sore throat and swollen eyes, the woman decided to visit her doctor for a checkup. Suspecting tonsillitis or glandular fever, the doctor prescribed her with a type of penicillin called amoxicillin. As it turned out, the antibiotic would end up causing far greater harm than good.
Without having a predisposition for penicillin allergies, the woman suffered a sever reaction to the medication; so bad in fact that her friends were forced to rush her to the intensive care ward as she slipped in and out of consciousness. She spent much of the next month unconscious, save for a few brief moments of disoriented awaked ness.
When she finally did fully regain consciousness, it was to the horror that doctors had been forced to amputate the tips of her right fingers, both of her legs (below the knee) and her left hand (at the wrist).
A reaction to the penicillin caused the development of a skin condition called Stevens Johnson Syndrome. This woman's case of Stevens Johnson Syndrome was so bad that doctors considered diagnosing it as its more severe counterpart, toxic epidermal necrolysis (TEN).
Her case of Stevens Johnson Syndrome was so aggressive that the only way to save the woman's life was to amputate the aforementioned limbs. She was quite literally burning from the inside out because her pores had been scarred shut. One of her doctors quite bluntly put it to her, "what's a foot for a life?" She claims that this rationale is what helped her to get passed her horrifying experience.
The woman recalls that her skin had blistered over, her hair had fallen out and she was basically blind because her corneas were so badly burned. Any bitterness that would be felt in the immediacy of learning of the ordeal she had been through quickly faded thanks to her positive attitude and loving, supportive family.
After going through a 'grieving process' for her lost limbs, she set out to achieve a list of goals that included learning to wear, walk and function using her new prosthetic limbs.
A period of five months was spent in the hospital dedicated to rehabilitating the woman's shattered mind and body.
After nearly five years, the woman has shed almost all of the effects of Stevens Johnson Syndrome from her body. The one lingering issue is with her sight. Stevens Johnson Syndrome is particularly aggressive in the eyes, remaining active long after most other symptoms have subsided. With an approximate 12% of her vision functioning, the woman decided to undergo a series of surgeries and procedures designed to improve her sight. An amniotic membrane transplant was followed by a limbal stem cell transplant. Specially designed medical contact lenses were also prescribed to prevent the woman's eyelashes from scratching the surface of her corneas.
Although she still has a long road ahead of her, she has recovered 50% to 60% of her vision, and has returned to school where she is currently working towards her degree. Her story is one of strength, character and perseverance.
Last Revision: April 25, 2008
MediaFact is a major online resource about drug side effects connected with Stevens Johnson Syndromeand Primary Pulmonary Hypertension.
