Awareness Can Lead to Action: SJS Awareness Month

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 disease that you have never heard of and you are unable to find any substantial information about this illness. You are grief-stricken and do not even know where to turn for support or information.

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 a rare and intense autoimmune sensitivity reaction to infections or medications that primarily affect the skin and mucus membranes, including the eyes. In Julie’s case, SJS resulted from taking a medication prescribed to control seizures. Julie was hospitalized for weeks with a high fever, severe rash and blistering over much of her body, and swelling of the eyes. Although Julie survived, she was left with permanent damage to her eyesight.

In these early days, Jean could find very little information or support for dealing with SJS, so she did what any exhausted, scared and lonely parent might do: she created it.

Jean McCawley established the Stevens Johnson Syndrome Foundation in 1995 with a mission to increase awareness of the condition and to serve as a resource for patients and their families whose lives have been affected by SJS and Toxic Epidermal Necrolysis Syndrome (TENS), another form of 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 BostonSight PROSE treatment.  Julie has been happily wearing PROSE devices since she was four years old.

Determined to increase awareness of SJS so it can be dealt with properly at its earliest stages, the foundation is working toward proclaiming August as SJS Awareness month in every state across the country. Jean has successfully persuaded the governors of multiple states to do so and she is striving for more states to follow suit.

The decision to create change or to help others can be life altering, for both the helped and the helper.  Are you an advocate in the making? 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 and a fact sheet are provided by the SJS Foundation. Let’s spread awareness and help change lives!

Comments

  1. sjsupport says:

    Thank you BFS for helping spread SJS Awareness and for all you do to help SJS patients!

Trackbacks

  1. […] This traumatic personal experience provided the spark for Jean to found the Stevens Johnson Syndrome Foundation. She never wanted another family to have to struggle so hard to find information about the disease and connect with others who shared these same experiences (more about her story here). […]

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