To: Food & Drug Adminstration and President Donald Trump
FDA mandatory adverse drug reaction reporting system
Tell the FDA we need a mandatory adverse drug reaction reporting system by medical professionals of all severe drug reactions including Stevens-Johnson Syndrome!
Why is this important?
Over 200 thousand people each year die from adverse drug reactions but the cases are probably higher due to a lack of reporting.
My daughter Julie developed Stevens-Johnson Syndrome at the age of 11 months old from a medication to treat pediatric epilepsy. We were not warned about side effects. After starting the medication she developed a high fever and blistering rash. Julie was misdiagnosed with chicken pox and continued on the offending drug. As a result she suffered blistering burns across her body and treated in a burn unit for 27 days. She is now blind in one eye and has low vision in the other, dry eye syndrome, photophobia and many other side effects, and she is one of the lucky ones. Many SJS patients do not survive. We were told it was a 1 in a million reaction and so rare we would never meet another SJS patient. Since 1994 we have heard from thousands of people from around the world that have suffered SJS and TEN (Toxic Epidermal Necrolysis) another form of SJS. It's not as rare as we were led to believe.
SJS can be caused by over the counter children's ibuprofen! Something available to us at the grocery story and carries no warning of SJS!
SJS is a severe adverse life threatening reaction to medication which causes patients to literally burn from the inside out!
No one has an accurate count of SJS because there is NO mandatory reporting system required by medical professionals. Only a voluntary site for patients. A mandatory reporting system will enable the FDA to see which medications have a higher incidence of adverse reactions leading to labeling changes and safety for consumers.
Please help us.
My daughter Julie developed Stevens-Johnson Syndrome at the age of 11 months old from a medication to treat pediatric epilepsy. We were not warned about side effects. After starting the medication she developed a high fever and blistering rash. Julie was misdiagnosed with chicken pox and continued on the offending drug. As a result she suffered blistering burns across her body and treated in a burn unit for 27 days. She is now blind in one eye and has low vision in the other, dry eye syndrome, photophobia and many other side effects, and she is one of the lucky ones. Many SJS patients do not survive. We were told it was a 1 in a million reaction and so rare we would never meet another SJS patient. Since 1994 we have heard from thousands of people from around the world that have suffered SJS and TEN (Toxic Epidermal Necrolysis) another form of SJS. It's not as rare as we were led to believe.
SJS can be caused by over the counter children's ibuprofen! Something available to us at the grocery story and carries no warning of SJS!
SJS is a severe adverse life threatening reaction to medication which causes patients to literally burn from the inside out!
No one has an accurate count of SJS because there is NO mandatory reporting system required by medical professionals. Only a voluntary site for patients. A mandatory reporting system will enable the FDA to see which medications have a higher incidence of adverse reactions leading to labeling changes and safety for consumers.
Please help us.