New Memorial page
You are not forgotten!
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The Stevens Johnson Syndrome Foundation hears from people from around the
world every day of the year. Unfortunately, we also hear from families that have
lost their loved one to SJS and TEN. Recently we have seen an increase in deaths.
Several were young children. Our thoughts and prayers are with all of these families.
We have added a new page to our website entitled SJS Memorial Page.
This page is dedicated to all those that have lost their courageous battle with SJS and TEN.
To view the detail [click here]
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Stevens Johnson Syndrome Awareness
Presentation
By, Jean McCawley
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On August 9th it was my honor to visit the Colorado Springs Utility
Company. I was invited by Penny Kagey to give a presentation
on Stevens Johnson Syndrome for their monthly safety meeting.
Penny knows all to well about SJS and TEN. In 2000 she lost her beloved mother, Kathleen Willis, to Toxic Epidermal Necrolysis. It has since been her goal to educate others into the warning signs of SJS and TEN.
Penny fought back her tears as she described to her co-workers the agony her mother experienced. She and her sister Patsy continually spread the word about SJS hoping to spare another family from the horror of Stevens Johnson Syndrome. [more]
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The FDA
Takes a step in the right direction
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According to an August 9th report by Reuters news agency, the U.S. Food and Drug administration recently rejected Cephalon Inc. experimental attention deficit disorder drug Sparlon, after a case of Stevens Johnson Syndrome was reported during the clinical trials. An advisory panel to the FDA recommended the drug not be approved due to safety concerns.
It is good to see the FDA taking notice of SJS. However labeling of over the counter ibuprofen products has yet to be changed. Recently the Stevens Johnson Syndrome Foundation received new reports of deaths to these products. Both were 5 year old girls. According to the SJS Survey forms we have had 50 cases of SJS and TEN related to these products. We will continue to work towards a labeling change to include Stevens Johnson Syndrome. [more]
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SJS Awareness Proclamation's
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We are pleased to announce that 14 states have joined us this year in naming
August Stevens Johnson Syndrome Awareness month.
Our deepest appreciation goes out to the following ladies for their help:
Sherry Callejo of Hawaii - proclamation pending
Mary Beth Dunn of Alabama, requested in memory & celebration of Heather Rose Kiss.
Lisa Kendig of Tennessee
Joyce McCauslin of Pennsylvania
Proclamations were received from the following states:
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Alabama
Colorado
Connecticut
Kentucky
Louisiana
Massachusetts
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Michigan
Nevada
New Jersey
New Hampshire
Pennsylvania (- A Resolution from
the House of Representatives)
Tennessee
Wisconsin
West Virginia
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To view proclamations please click on the following link: [Click here]
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Great sunglasses for SJS patients!
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WindRams comes with 3 interchangeable RamFlow lenses. Made of impact resistant poly-carbonate, these lenses are premium optical quality, distortion free and offer the wearer 100% UV protection. They block wind which can cause more discomfort for patients that suffer from dry eye syndrome.
Visit their website at: http://windrams.com
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SJS Foundation Reminders!
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Please help us track SJS and TEN cases by completing our SJS Survey Form.
We now have 825 completed surveys.
SJS Awareness products are available on our Cafepress SJS Shop. We have
recently added a new section with memorial tributes.
Please use Goodsearch.com when searching the Internet. By designating the
Stevens Johnson Syndrome Foundation as your favorite charity, the SJS Foundation
will receive a penny for every search. Those pennies add up.
[more]
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