Stevens Johnson Syndrome Foundation
     Stevens Johnson Syndrome

December, 2011

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Happy Holidays!

Wishing you and your family a Happy Holiday Season!
May the beauty of the Holiday Season be with you and yours throughout the year!

Adverse Drug Reactions
Julie McCawley

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]

Petition to the FDA
Mandatory Adverse Drug Reporting System

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!

Save the date!

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 to add your event information.

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Youtubes from SJS Survivors

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]
  • Soup Supper helps SJS Foundation

    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]

    SJS Kids Contest

    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

    How you can help SJS Foundation?

    Now you can donate your vehicle to help the SJS Foundation Through Vehicles for charity, the SJS Foundation will receive a check once the car is repaired and sold at auction. Your donation through vehicles for charity is tax deductible. [ Click here ] for more information on how you can help.

    If the information contained in our website was helpful to you, please be aware that it has been made available for public access strictly through volunteer effort and funding. The Stevens Johnson Syndrome Foundation is a 501(c)(3) non-profit organization dedicated to promoting public awareness to adverse drug reactions as well as to provide immediate information regarding treatment of those suffering from this devastating affliction. Please help us keep this website running. Your tax-deductible donations will help us to continue this good work.
    [ Click here ] to make your generous contribution to SJS Foundation..!!

    Articles or advertisements referring to specific programs, services and/or products do not constitute endorsement by the Stevens Johnson Syndrome Foundation. Articles involving medical aspects of SJS are not intended to be medical advice and readers are cautioned not to make any changes in their treatment based in information without consulting with a physician.
    Information for Donors: The Stevens Johnson Syndrome Foundation is a 501 (C) (3) tax-expempt corporation. All donations to the SJS Foundation are tax-deductible. [ Click here ] for Tax information.
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