Stevens Johnson Syndrome Foundation OnLine Newsletter

Stevens Johnson Syndrome Foundation OnLine Newsletter

5 Pages · 2005 · 53 KB · English

Stevens Johnson Syndrome Foundation OnLine Newsletter http://www.sjsupport.org/newsletter/2005/january/printableindex.html 1 of 5 1/20/2005 2:47 PM

Stevens Johnson Syndrome Foundation OnLine Newsletter free download


Stevens Johnson Syndrome Foundation OnLine Newsletterhttp://wwwsjsupportorg/newsletter/2005/january/printableindexhtml 1 of 51/20/2005 2:47 PM Stevens Johnson Syndrome Foundation Newsletter January, 2005 Go to Website Email UsMake a donation! Click here for printable PDF version 2005 the year of SJS Awareness As most of you are aware SJS has been in the news a great deal This is a a tremendous opportunity for all of us and we need to take advantage of it The SJS Foundation has received numerous calls and emails from parents with questions and concerns about SJS These are parents that DO NOT HAVE A CHILD WITH SJS! The public is visiting our website They are educating themselves! People are finding out about Stevens Johnson Syndrome before it finds someone they love! Not the way most of us found out They're are not standing at the bedside of their loved one, praying, crying and desperately trying to understand what has just happened We need to continue to educate the public, even after the media attention dies down You can help by visiting our website Print the SJS Fact sheet and take it to your doctors Hand it out to your children's schools Email the link to the SJS Foundation website: wwwsjsupportorg to 10 of your friends, ask them to email it to 10 of their friends Lets not lose the momentum Together, we can make a difference There are times when medications are definitely needed and beneficial, but through public awareness and education we can help the future SJS victims to receive a quicker diagnosis, and a proper treatment plan Children's Ibuprofen products in the News As most of you are aware a lawsuit has been filed against the manufacturer of children's motrin in the case of a little girl that went blind The SJS Foundation has written to the FDA about Stevens Johnson Syndrome and children's ibuprofen products for over a year We were told they have not seen an increase in SJS cases The SJS Foundation has received reports of 2 new cases of SJS already this year to these products in children We are only 2 weeks into the new year There have been more reported cases of SJS to ibuprofen then to acetaminophen We are all taught not to give children aspirin due to the risk of Reye Syndrome Yet there is no warning of SJS to the public in NSAIDS for children How fast do you really need a fever to come down? A fever is sign of an infection Many doctors don't even consider a fever a concern if its under 101 We as SJS Survey Form If you have not completed our survey form in the past we are urging you to do so now We need hard facts Since the initiation of the survey form last year we have had 222 patients complete the form The FDA's reporting system is not accurate The only way we will get SJS out is the open is to prove that it is not rare Not only will completing the survey help in that aspect but we will be able to accurately track certain drugs that have a higher incidence of SJS and lobby for warning labels Your assistance in this project is greatly appreciated [ Click here ] to go the SJS Survey Form SJS Awareness Month in your State Once again it's time to write to your governor requesting that August be named SJS Awareness Month in your State We have Stevens Johnson Syndrome Foundation OnLine Newsletterhttp://wwwsjsupportorg/newsletter/2005/january/printableindexhtml 2 of 51/20/2005 2:47 PMconsumers deserve to be informed of the risk of dangerous sideeffects in over the counter drugs When this medication was by prescription it carried the warning of SJS, yet when it went over the counter, readily available to all

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