The Food and Drug Administration is being investigated by a congressional committee. Now is our chance to let our voices be heard. Please write your SJS/TEN story to:

SENATOR CHARLES GRASSLEY
135 Hart Senate Bldg.
Washington, DC 20510 - 1501
Heading up committee on putting safety first.

SJS is not rare. We need public awareness of this devastating reaction. I hear from families and patients every day suffering from this nightmare. There is nothing more heartbreaking than to hear a person’s cries and anguish over losing a loved one to a medication, or to listen as they suffer blindness, lung damage or many of the other debilitating side-effects from SJS/TEN. They all ask the same question. WHY? Why didn’t anyone tell us about this? Why weren’t we warned? I don’t know the answer to that, but I do know this, together we can get it out in the open. We can get results. One voice alone is not enough. We need your help!

There are over 1000 people on our mailing list. Yet only a handful, 10 at the most join with us in writing. It only take 10 minutes or so of your time. You owe it to yourselves to get the word out. We owe it to the future SJS victims. I am begging you, PLEASE HELP! Please send a written letter by postal mail. Emails are usually disregarded.

January is SJS Senator Awareness Campaign. Your same letter to Senator Grassley’s Committee can be sent to your local senator. The more we hit our public officials with the reality of SJS the better our chance to get new safety labeling. To access your Senators address please go to:
http://www.senate.gov/general/contact_information/senators_cfm.cfm

If you are not in the United States, please do not feel left out. Write your story to Senator Grassley as well. SJS is a worldwide issue. Hundreds of people from other countries have contacted us, saying doctors don’t know about this syndrome over here. I beg to differ, they most certainly do. They, just like here in the states, sweep it under the carpet. We hear from the United Kingdom at least twice a week. India has a huge amount of SJS. The Netherlands and Japan have their own support groups. Why? Stevens Johnson Syndrome is not rare. Let us shout it from the Himalayas to the Rocky Mountains, from the Empire State Building to the Eiffel Tower. We are here and we will be heard. We will not be silenced! Together we are one voice that will not go away.

Let us make 2005 the year that SJS becomes public knowledge!

With warmest regards,
Jean Farrell McCawley