SJS: Awareness Can Make all the Difference

Imagine keeping vigil all alone at the hospital bedside of your 10-month-old as she struggles to survive. You’ve just been told by medical staff that she has developed a severe, life-threatening disease that you've never even heard of. Grief-stricken, you desperately search for help.

This scenario is exactly what Jean McCawley, then a single mother, experienced in 1994. Jean’s daughter, Julie, was diagnosed at age 10 months with Stevens Johnson Syndrome (SJS). SJS is an intense autoimmune sensitivity reaction to infections or medications that primarily affect the skin and mucus membranes, including the eyes. While SJS is often described as rare, the actual incidence rates remain unclear, in part due to the lack of a national mandatory reporting system for adverse drug reactions.

In Julie’s case, SJS resulted from taking a medication prescribed to control seizures.  She was hospitalized for weeks with a high fever, severe rash and blistering over much of her body, and swelling of the eyes. Julie survived, but she was left with permanent damage to her eyesight. During this time, Jean found almost no information or support for dealing with SJS. Frustrated, scared and alone, she did what any exhausted parent might do: she created it.

In 1995 she established the Stevens Johnson Syndrome Foundation with a mission to increase awareness of the condition, advocate for mandatory reporting of adverse drug reactions, and to serve as a resource for patients and their families whose lives have been affected by SJS. One of her earliest efforts was to start an online support group. In a classic case of how giving can turn into receiving, this support group is how she first learned about PROSE.  Julie has been a PROSE patient since she was four years old.

Determined to increase awareness of SJS so it can be dealt with properly at its earliest stages and increase survival rates, the foundation is working toward proclaiming August as SJS Awareness Month in every state across the country. So far this year the governors of eight states have come on board with more to follow. Boston Foundation for Sight is proud to be the liaison for the Massachusetts Governor’s office Proclamation for 2013; an honor we have held since 2011.

Need some inspiration and ideas for what you can do to make a difference?

Engage: Join one of the many SJS support communities and encourage your friends and family to join you:     
SJS Awareness Facebook group  
SJS Foundation support group and SJS Kids Support

Advocate: If your state does not have a proclamation in place, you can help by submitting a letter of request and an SJS fact sheet to your state’s governor. Sample letters, a fact sheet, and guidelines are provided by the SJS foundation. Learn how Jean and Jill did it here. 

Educate: Create an awareness-raising event in your own community, like the walk happening on August 24, 2013 in Scott, Louisiana.

Share: Read and share these inspirational survivor stories.

Volunteer: share your experience, strength and hope with others; see how Eileen did it.

Inspire: Watch one of the many videos on SJS available on our YouTube channel (some created by our young survivors!) and share them with others.

SJS Kids Week 2012 - Astoo, Adju and Nay making jewelry
SJS Kids Week 2012 - Bailey and Mariam enjoy Canobie Lake Park
SJS Kids Week 2010 - Group shot