ASSOCIATION OF VICTIMS OF MEDICINES
You are victim of Stevens johnson syndrome,Lyell syndrome (toxic epidermal necrolysis), that is really not of luck, this occurs once on 1 million. This is the speech that most of victims hear. But it does not take into account of what is the reality of Stevens johnson syndrome ,Lyell syndrome : a disease caused by medicines. The statistical risk must be considered for each medicine, it can be nearly zero for some medicine, and very high for others.
It is this rigorous scientific process that has been applied in a survey, of which result appeared in LANCET (scientific magazine of international renown) that indicates for a medicine (Lamictal (lamotrigine)) the risk of stevens johnson syndrome,lyell syndrome is of 1 in 1000 for adults, and of 1 in 50 to 1 to 100 for the child. So we get a quite different scale of rate.
You can verify this information by clicking on the link below, towards the card of Latrimogine of the site of BIAM, see the after-effects rubric (effets secondaires in french) , paragraph 21 stevens johnson syndrome , where this survey is referenced in LANCET (Lancet 1996; 348, 1597)
A link to the site of BIAM where are listed the molecules which can cause a Lyell syndrome (toxic epidermal necrolysis).
According to information published in a thesis for a doctorate in pharmacy (C. VECHOT about Stevens johnson syndrome in 2005, university of pharmacy Paris 11), within a period of 3 years, there would have been 300 indexed in France and 300 cases in Germany, then let us think that when we hear that stevens johnson syndrome ,lyell syndrome is very rare, we can also think that it occurs very often.
According to the STEVENS JOHNSON SYNDROME FOUNDATION, they would be informed of at least 15 cases by week. It is not an official organization, however, 15 persons (or their relatives) indicate that they made (or are making) a stevens johnson syndrome.
It is generally admitted that the death rate of stevens johnson syndrome is evaluated around 10%. The Lyell syndrome (toxic epidermal necrolysis) is generally evaluated at 30% , however, in a thesis of 1995 on Lyell syndrome (university of medicine of Clermont Ferrand) the author (D. POPINET) indicates that the death rate of Lyell syndrome (toxic epidermal necrolysis) can go until 70%.
We know that a person who made a stevens johnson syndrome in 1991, made another stevens johnson syndrome in 2002, and did not survive after the second syndrome. Note that there would have been negligences at the medical level.
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