Steven-Johnson Syndrome

chloeWe would like to share Chloe’s story with you as told by her Mum Susie. They are both truly inspiring and courageous sharing their journey with Steven-Johnson Syndrome…

August is Steven-Johnson Syndrome Awareness month. You may be thinking to yourself what is Steven Johnson Syndrome?  Up until December 2014 I also had no idea what SJS was, until my 4 year old daughter Chloe was diagnosed with SJS.

Steven-Johnson Syndrome (SJS) is a rare but serious illness which impacts the individuals’ skin and mucous membranes. The underlying cause is still unknown however, doctors believe SJS is linked to a reaction to a medication or an infection. Unfortunately, like Chloe, many people are misdiagnosed and when left untreated, SJS can cause permanent blindness, brain damage, hearing loss and even death.

b andage

Unfortunately, at the beginning of the process, the doctors were unsure of the cause or what they were dealing with because of the rarity of SJS. Chloe’s body was so badly covered in lesions that she was treated by the burns unit at Princess Margaret Hospital in Perth, Western Australia as well as the dermatological team. Her eyes were swollen shut and needed to be forcefully opened several times a day (sometimes up to 8) for eye drops and surgical scrapings to ensure they didn’t stick together permanently.tramp

In just 4 short months Chloe has had 9 surgeries to assist the eyes but unfortunately there has been no progress unless you count the diagnosis that she will be blind as progress.

Since being diagnosed with SJS, Chloe has had to learn how to walk and eat again. Chloe is now solely dependent on her sense of touch and smell to navigate herself throughout her everyday life.

After many weeks spent indoors due to Chloe’s severe photophobia, she has recently started to enjoy life as an ordinary 5 year old playing in her back yard with her two sisters. Chloe uses her sense of touch as a guide around her backyard with a hose leading the way through various activity spots.

There is hope that with medical intervention the constant pain and sensitivity to light will improve so Chloe’s quality of life can improve.

As August is the global Steven-Johnson Syndrome awareness month we would like to educate you on the symptoms, diagnosis and causes of this dreadful disease. The Steven Johnson Syndrome Foundation is a non-profit organisation aiding individuals and families with emotional support.

Symptoms leading up to diagnosis: Symptoms:
  • Fever
  • Sore mouth and throat
  • Cough
  • Burning eyes
  • Rash, blisters, or red splotches on skin
  • Persistent fever
  • Blisters in mouth, eyes, ears, nose, genital area
  • Swelling of eyelids, red eyes
  • Conjunctivitis
  • Flu-like symptoms
  • Recent history of having taken a prescription or over-the-counter medication Target lesions are not always seen in SJS!

IF YOU NOTICE TWO OR MORE OF THESE SYMPTOMS, CONTACT A PHYSICIAN IMMEDIATELY!

3girlsTo find out more about Chloe’s story or to donate to Unite for Chloe visit https://www.gofundme.com/uniteforchloe. To find out more about Steven-Johnson Syndrome Foundation visit www.sjsupport.org.

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