The story of Linda
Hello, my name is Linda VonTress and my mother, Vivian L. Dance, had survived the life threatening disease known as Stevens-Johnson syndrome/Toxic Epidermal Necrosis. This disease is caused from an extreme allergic reaction to antibiotics. In her case, the reaction was to an oral rinse called Nystatin. Her reaction began with facial swelling after she had began rinsing with the Nystatin, which was prescribed because mom felt that she had contracted thrush in her mouth. Mom started swelling on January 4, 2015. By January 8, 2015, mom begged to go to the hospital to get checked out. We barely waited fifteen minutes before the nurses took mom back to the examination area and a team of doctors began to work on her. Mom has diabetes which complicates any medications the doctors can prescribe for her as well as a host of drug allergies and she is prone to infections, however, whenever the doctor would prescribe a new antibiotic for her to take, I would warn her about Stevens-Johnson Syndrome. I did not know a lot about the disease and had only heard about the disease from watching and episode of ‘Mystery Diagnosis’ on the Discovery Life Channel. The narrator mentioned that the disease is characterized by a rash on body and the victim has hours to get to the hospital for treatment. Well, my mother had developed the rash and we wasted no time in getting her to the emergency room. While in the ER, I asked the nurses if they could test mom for Stevens-Johnson Syndrome, but was told the hospital did not do such tests and only a primary care physician could perform such a test. The ER Physicians had to take mom to surgery to place a breathing tube, so I called mom’s primary care with my suspicion. When I found mom had come out of surgery, my brother. who joined me at the hospital, and I went to check on her. Up on the ICU/Recovery floor, my brother and I met mom’s primary care physician and I asked if mom had contracted Stevens-Johnson Syndrome and she told me mom had. We are learning just how few physicians have even have even heard of the disease. The primary care physician told us that mom had to e placed into a burn center for treatment. After three weeks in the burn unit ICU and one week in a rehabilitation center, mom came home. Now, I am her caregiver although I, myself suffer from a congenital heart defect called Tetraolgy of Fallot. Mom is burned over twenty percent of her body with the worse part being her chest and back. This is a long term, life threatening disorder and we must be careful and diligent over ever medication that she is prescribed. as well as keeping her living environment as clean as possible. We will forever be mindful of infection and bug bites. Mom can now never be exposed to extreme cold or heat as her natural thermostat is out of syn, she is experiencing vision difficulties and numbness in her tongue and one hip. Mom, myself and my mom’s fiance, who is a throat cancer survivor, are all on disability/Social Security and can ill afford the most necessary items mom needs and that is a new home. As God believing Christians, we know that with much prayer, mom made such a miraculous recovery. We pray for all those on this Rare Disease Day and believe that there will someday be a cure for all.