Hi from Handana

My Story:

24 years ago today I went into the burn unit as a patient with Stevens-Johnson Syndrome (SJS).  I was having a reaction to a medication.  SJS is an autoimmune reaction which causes your skin to blister to the point that you have 2nd and 3rd degree burns.  The story didn’t start there though.  Let me back up.

 

I was a 16 year old girl in high school.  The medication I had a reaction to was for depression.   I was struggling with the fact that I didn’t think I was good enough.  The reasons I was not feeling good enough is for another day.  But the fact remained that I felt I needed to be the smartest, the prettiest, the best at everything I did in order to feel good about myself.   This is impossible to achieve so I never felt good about myself.  So we decided to try a medication to try fix the problem.

 

After being on the medicine for about 3 weeks, I began to have some itching in my eyes and throat.  We went to my pediatrician and asked if this was a reaction from the medicine.  She said no and that she thought it was a sign of strep throat.  She took a throat swab, which came back negative.  She decided to put me on an antibiotic and send me home treating it as if it was a virus.

 

The antibiotic she prescribed increases the medication I was having a reaction to, in your blood level.  We, of course did not know this at the time.  I went home from the doctor’s office and continued to get worse.  I began to have blisters on my arms and chest.  We called the pediatrician and she explained the blisters as part of virus presenting itself.  I remained on both medicines and went to bed.

 

By the morning, I could not swallow and had blisters covering most of chest, arms, back and face.  We went back to the pediatrician’s office and was referred down the street to a dermatologist office.  At this point, sitting in a waiting room with kids my own age waiting to be treated for acne, I realized how sick I was because I didn’t care they saw me with drool coming out of my mouth and my eyes swollen and blistered.  I just wanted to be better.  This would not come for weeks to come.

 

We were referred by the dermatologist to Barnes Hospital.  I was admitted onto a floor and was sharing a room with another patient.  Still on the medications that put me in the hospital.  It would take the doctors another day before they stopped the medicine and discover that it was a reaction from the drugs.  The two things I remember about that first night, was the fact that I was going to have to miss school the next day which was devastating to me.  I was so worried about getting behind in my studies.  I also remember not being able to swallow because of the pain and having to lay in my own spit and drool all over my pillow with open wounds on my face.

Looking back I am grateful for this event.  Having your life turned upside down and almost taken from you makes you so grateful for every day since.  And thankful I am!

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