Adverse Drug Reactions
Julie McCawley
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When I was 11 months old I was diagnosed with Pediatric epilepsy. I was taken to
a neurologist that prescribed Phenobarbital to control my seizures. My mother asked the
doctor about side effects and he told her the only side effect was drowsiness. Two
weeks later my eyes swelled shut and I started running a high fever. My mother rushed
me to the pediatrician who told her I had an ear infection, conjunctivitis in both eyes
and strep throat. Before we left the doctor’s office I started breaking out in a blistering
rash and so the doctor then added chicken pox to the long list of diagnosis. She also said because
I was running a high fever to give me Tylenol alternating with Children’s Motrin and to make
sure I did not miss my dose of Phenobarbital as I could have a febrile seizure.
View full article: [PDF]
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Petition to the FDA
Mandatory Adverse Drug Reporting System
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The Stevens-Johnson Syndrome Foundation needs your help.
Please click here to access the Mandatory Reporting System
for adverse drug reactions. Less than 1 percent of all drug reactions are reported
to the Food & Drug Administration. It should be mandatory that attending physicians
And hospitals report these reactions to the FDA. Over 700 thousand people each
Year suffer from adverse drug reactions and that is a conservative figure since
there is no mandatory reporting. Of those 700 thousand more than 200 thousand
Die! How many of these victims are SJS and TEN patients? Old data is continually
being quoted as statistics giving the impression that Stevens-Johnson Syndrome is
1 in a million when in fact NO ONE really knows how many cases there are.
Together we can change this and get to the truth. Won’t you please take a minute
to stand with us and sign the mandatory adverse drug reaction petition?
Please ask your friends and family to sign as well and together we can make a difference!
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Save the date!
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We hope you will be able to join us on Saturday, August 11, 2012 as we walk for SJS/TEN Awareness at beautiful lake arbor in Arvada, Colorado. Please check back for more details as they become available. There will be new events posted on the Stevens-Johnson Syndrome Foundation website scrolling marquee. If you are planning an SJS Awareness event, please contact us at sjsupport@aol.com to add your event information.
View full article: [PDF]
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Youtubes from SJS Survivors
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SJS Survivors are doing all they can to help spread
SJS Awareness and have now taken to Youtube to
deliver their message. This is an excellent way to help
get the word out. Thank you all for your courage and sharing
your story.
Becki Conway: [video]
Rachel Guiterrez has a diary of her recovery: [video]
Seth O’Neill: [video]
Julie McCawley gives SJS Public Service Announcement: [video]
Julie’s Story at the Ketogenic Diet Conference: [video]
Karyl Bell: [video]
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Soup Supper helps SJS Foundation
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Once again we would like to thank John Hornberger for remembering the
Stevens - Johnson syndrome Foundation. For the past few years John and his
sister Ellen have been preparing soup for their annual soup supper and
sending the proceeds to the SJS Foundation. The entire extended Hornberger family
continue to join him in his efforts.
John suffered from TENS and has always said that God spared him for a reason. He has dedicated his life to spreading SJS Awareness and volunteers as a Pennsylvania Support Group Facilitator as well as being a wonderful chef! This year Ellen made SJS lighthouse cupcakes in addition to her homemade chicken noodle soup. Lisa and Donna Hornberger prepared vegetable soup. The Furmano Foods helped by donating a case of northern beans while CATV advertised the event held at St. Peters church.
View full article: [PDF]
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Prayers
SJS Kids Contest
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In 2009 CNN investigated prayer and found that patients that were prayed for
by strangers without their knowledge had found that 11 percent of those patients
had a better outcome than the patients that were not prayed for. Praying for the healing of others is a
form of an alternative medicine method known as "distance healing." Please visit the
Stevens - Johnson Syndrome Foundations prayer list and take a minute to say a prayer for an
SJS patients and their family here. To submit a prayer click here.
Calling SJS KIDS! Announcing the SJS Kids art contest. Please submit a drawing
for the 2013 SJS kids calendar. Contest will start Feb 1 until March 31st, 2012
All entries will be displayed on the SJS kids website.
Mail your drawings to
SJS Foundation
PO BOX 350333,
Westminster, CO 80035
or email a jpeg to sjsupport@aol.com
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