Lindsay Estacio had a happy, active childhood…she couldn’t have asked for more. Lindsay was always close to her mom, but when her parents got divorced, the communication broke down. Having a difficult time with feeling depressed, dealing with middle school and feeling a bit off, Lindsay just wasn’t herself. Her mother, Lori Lewis, eventually decided it was time to see someone and try to get some help. Little did she know that this would put her on a path that she never could have imagined. Here are a list of some of his personal symptoms and a brief version of the path Lindsay took to get a final diagnosis.
Some of the symptoms he showed over time:
- In middle school, Lindsay saw a psychologist who concluded that Lindsay was severely depressed and put her on medication to balance out her mood.
- Starting to feel better, Lindsay went to the beach with her friends, to an amusement park and then late night swimming with friends….a great day! The next morning she noticed a pain in her mouth. There were blisters inside her mouth and on her tongue. She headed to the beach clinic to have it checked out. The doctor told her it was a virus that needed to run its course and released her.
- About 2 hours later, she developed a bad headache, fever, swollen glands, sore throat and felt horrible. Worrying that the doctor was wrong she called her mom who got in the car and arrived in about 4 hours. When her mom arrived, the blisters were bleeding, she was itchy and her eyes were beginning to swell. Mom put Lindsay in the car and they headed home….200 miles away.
- Within hours Lindsay was screaming because the itching was so bad. They went straight to the local ER. The blisters had spread to her face, eyes, arms and legs. There was then the appearance of little red dots all over her skin and were spreading. Her skin became so burned looking that it appeared she had dipped herself in a hot oil bath. The local ER told her that they couldn’t help her. She was transferred to a burn unit by helicopter.
- Dr. Linwood R. Haith knew she was critical when she arrived at Crozer Chester Medical Center’s burn unit. Purple-reddish blisters covered most of her body and had difficulty breathing. Her mucous membranes were being effected. The skin of her lungs was being affected and she needed to be ventilated.
- Worried about infection and the progression, Dr. Haith poured over medical books trying to figure the mystery out. With the intense pain, Lindsay was medicated to a point when she was in a mild coma. Questioning the mom as to any change, Lindsay’s mom mentioned the anti-depressants her daughter was given. He immediately ordered a skin biopsy.
Final Diagnosis:
- Stevens-Johnson Syndrome – rare and deadly reaction to certain medication. Healthy people have white blood cells to defend their bodies from foreign substances, but with this disorder, the white blood cells are reprogrammed by the medication to target the mucus membranes in skin. As the top layer of skin dies, blisters form. Less than 1 in a million people have this reaction. Flu-like symptoms in the beginning are a warning for this.
What is ahead for her:
- The chance of survival was only around 50/50. As he took her off the medication, they applied artificial skin to help her heal. Within 2 weeks Lindsay was able to breathe on her own again. However there was damage to her eye and she may go blind.
About 5 weeks after they arrived, they were able to leave the hospital. Lindsay still had severe scaring all over and pain with her eyes. - Unable to return to school until her skin completely healed, Lindsay’s mom stayed home with her for a year. She eventually healed but one of her right eye was permanently damaged.
Now 22 years old, Lindsay is optimistic about her life and future. She wants to become a nurse to help others, like they helped her.
THANK YOU, FOR AIRING LINDSAY’S SJS STORY. TODAY, I AM A ONE YEAR SURIVOR OF SJS. MY NAME IS MONICA L. BALL AND I AM A 34 YEAR SINGLE WOMAN WHO DEVELOP SJS ON 09/30/10. I AM A LUCKY SURVIOR BECAUSE THE HOSPITAL THAT TREATED ME DIDN’T DIAGNOSE ME WITH HAVING SJS. LIKE LINDSAY, I DEVELOP THOSE SIMILAR BEGINNING SYMPTONS EXPECT FOR THE BLISTERING AROUND THE EYE. DURING THE SJS STAGES, I WAS IN A 12 MEDICAL INDUCE COMA, SWELLING ALL OVER MY BODY, DEVELOP A RASH FROM HEAD TO TOE ALL OVER MY BODY, I HAD KIDNEY DIALYSIS, TWO BLOOD TRANSFUSION, BLISTERING INSIDE AND OUTSIDE MY MOUTH AND TONGUE, SUFFERED FROM HIGH BLOOD PRESSURE AND DIABETES- TAKING INSULIN, ALL MY MAJOR ORGANS FAILED, I WAS VENTILATED FOR 14 DAYS, HAD TO LEARN HOW TO WALK AND WRITE AGAIN THROUGH A REHAB FACILITY, SKIN PEELING, AND ETC. TODAY, I AM STILL SUFFERING FROM SJS AND WOULD LIKE TO GET IN CONTACT WITH DR. HAITH ABOUT MY SJS CASE. I WOULD LIKE FOR YOUR PRODUCERS TO AIR MORE STORIES ABOUT SJS BECAUSE NOT ALOT OF DOCTORS IN THE MEDICAL FIELD KNOW HOW TO DETECT AND TREAT SJS.
AGAIN THANK YOU FOR THIS STORY BECAUSE YOU GIVE MORE SJS SURVIORS HOPE IN FINDING A CURE AND MAKE AWARENESS ABOUT SJS.
ONE YEAR SURVIVOR- MONICA
I agree, Monica. I am a 2 year survivor of SJS. There are not enough doctors out there who know how to deal with the after effects of Stevens Johnson Syndrome. I feel like they got me through the initial period, but no one knows of the long term effects, other than the eye damage issues. If anyone has a good source of information about what to expect long term, please let me know! Thank you!
This is what my first husband died from Oct. 21, 1992. He was a normal working man, working out of town as a commercial builder. He wasn’t feeling well, walked into a walk-in clinic nearby to find out what was wrong. Diagnosis: He had bronchial pneumonia. Instead of just giving him, an unknown patient to them, a scratch test, they gave him a shot, and some pills to take. A few days later he was taken from his hotel room, semi-conscious to the hospital by an ambulance. Ten days after receiving the shot of Ceftin, he died. He was just thirty-three years old and basically never was sick. What started out as a treatable, non-life threatening illness, for this dedicated hard working man, because of the inability of professionals to just do that simple scratch test, he died. It is a sad thing that years later SJS is something that the money making medical world still wants kept in the dark. Which, sad to say for many of SJS survivors, they also are left living in the dark, but not by choice.
Jeannie, SJS – It is a life threatening disease regardless of the medical attention. You should not blame a small walk in clinic for not knowing how to handle a complex and rare syndrome????