ASSOCIATION OF VICTIMS OF MEDICINES
On March 07, 1981, I didn’t feel very well; I had an eardrum graft a few weeks before, and the surgeon prescribed me a post-operative treatment. My father collected it from the pharmacy, and the seller told him “it is a strong treatment”. I thought to myself, I am going to take that treatment and all will be ok. Well no! I began to feel feverish (sensation of flu) and asked my mother to give me an infusion with which I recover from the flu very quickly, because I was rather against the chemical medicines. I took the prescribed medicines because I trusted in the system, and I had read the notice on the medicine that was advised against use for pregnant women. I felt protected. In the afternoon, I was going for a walk, and I came back more feverish, my mother gave me infusions, and that did’nt make me feel better. In the night of 7 to 8, and of 8 to 9, I cannot sleep, my eyes burned, I stood up to splashed them with water, that relieved me very little. March 9, I visited some friends in the morning, but light hurts my eys, I felt bad in the afternoon, I felt very tired, my throat was burning. In the night, my father called a doctor, who looked at my throat. My parents show him 5 or 6 times the box of sulfamides, the doctor diagnoses a simple angina, prescribes me some remedies, but I continue to feel worse and worse. The following day, my mother calls our family doctor, who prescribes injections of antibiotics. A few days later, the nun that makes the injections saw that I was getting worse and worse, and tells me : your eyes and your lips are inflated, you suffer from an allergy. My doctor finishes by diagnosing the Syndrome of Stevens Johnson. We again show him the box of sulfamides, and he says : “it is that”. So I stop the medicine immediately, and recover some strengths. But after 2 days, I am hospitalised exhausted, because I did not eat and drink since 8 days. They make me a perfusion, and I feel saved. It is at the hospital that my eyes begin to hurt me. After about 10 days of hospitalisation, I simply leave hospital without any advice. After many ophthalmologic cares, I could only slow down the deterioration of my vision. I lost 80 to 90% of my vision. In 2001, I nevertheless succeeded to make condemn the laboratory that manufacture the medicine. E D
April 1981, I was a six year old little girl, and I was suffering from angina. Then fever kept on increasing; my eyes hurt, and blisters appeared all over my body. The doctor diagnosed a varicella. Some days after, my parents noticed no improvement, and that my condition worsened, they recalled the same doctor, who still diagnosed a varicella, but over-infected, and prescribed a new treatment. Two days after, my parents found me at death’s door, and decided to take me at the emergency department. I fell into a coma for 3 weeks; during all this time, I received lots of medicines, transfusion, and the doctor told my parents that my death is very close, because he discovered that I suffered from Syndrome of Lyell, and that I will not pull through. Which medicine caused the Syndrome of Lyell, I do not know ( medical file disappeared). What I know is that the Sydrome of Lyell took my childhood, and today after all these years, the aftereffects are still there. DL
At the beginning of October 1994, I am 37 years old…..there is about 3 weeks that I am taking a treatment against gout (uric acid in the joints) : ZILORIC and COLCHIMAX. It is the basic treatment, on the basis of anti-pain and anti-inflammatories medicines. Nothing abnormal, good diagnosis, good prescriptions, respected posology, tried and compliant medicines, no known contra-indication, all seems OK. But it will be the beginning of hell. First of all, after taking those medicines for 15 days, my eyes began to run. I constantly cry, and my eyes itch. Then it is a kind of flu-syndrome, with stiffness, nauseas, migraine…..that worsens, and the doctor tells me to stop the treatment, but it is already loo late. Then it is a real night of nightmare. I am victim of tremors, convulsions, unceasing hiccup that makes me so tired. They will last some days, until I fall into a coma. I am alone at home, prostrated,, and I cannot recognize my malformed and puffed up face. The hours pass; I do not perceive that the least traumatism tears my skin…..liquids escape and it painfully burns me. I will remain some weeks at 42,2° until 42,3°, and more sometimes. In the small hours of that sleepless night, I burn the tip of a pair of scissors and disinfect them with alcohol, and I cut my skin to open my mouth and to phone for help. Even my hands are puffed up and tinged with blood.
Hospital….Emergencies…dubitative doctors, services of medicine, all the dermatologists stayed at my bedside. Total diet, whereas I did not drink and eat (more than 48 hours); I become blind, eyelids glued. Then, it is the service of intensive care. I am in a comatose state, and have a private jet to Orly. A helicopter evacuates me to a service of burn treatment center at Henri Mondor Hospital in Créteil. When I wake up, my skin is a gigantic crust, like a crab. I am transfused with 11 liters of liquids per day. I have lost half of my weight in 3 or 4 weeks, I weigh only 40 kilos. I am only a poor envelope that cracks everywhere, I am given some baths. My skin keeps on burning, but in a random and localized way. Back to Saint Brieuc, it is necessary lo leave the place to the next person. I am considered as a big burned, 40% to the second deep degree (but how much % inside?). Life goes on – 5 or 6 weeks in hospital and house of rest will follow.
I will not benefit from a pension from The Social Security, (although previously handicapped, the “Cotorep” will reduce my rate by half). For the “Cotorep” as well as for the Social Security, the Syndrome of Lyell does not exist; it is a simple cutaneous allergy. But that does not stop the Social Security to present itself as plaintiff claiming damages to the lawsuit I bring against the laboratory that produce the molecules responsible for these allergies, so that to be repaid of the social cover which I benefited. I continued to live, alone, after these two months of hell, losing my hair and my nails one by one. The crisis of anguish follow : I know that the re-ingestion of the responsible molecule would be fatal, and I have many nightmares. I will think to be medically followed for a time, but doctors have others things to do, they deal with the most hurried, and cannot do anything more for me. A few years later, I believe that I never recovered from this Syndrome of Lyell. No more breath, bleeding, problems of eyes and lashes, of mucous membranes (salivary and lachrymal glands burnt) fatigue and intensive pains (fibromyalgia in more) I cannot take medicines any more (repetitive medicinal hepatitis). It is now my life, a life shortened by 10 to 15 years I suppose. RC
Here is a link to the site of a young American girl, who died of the suites of STEVENS JOHNSON SYNDROME caused by children motrin.