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Worst appears to be over for my sister
By MARK CRIPPS MANAGING EDITOR, TALES FROM THE CRYPT
Columns
Apr 24, 2009
In last week’s column I wrote about my sister, who is suffering from a rare condition known as Stevens-Johnson Syndrome.

Many readers called or emailed to extend best wishes and prayers to Lisa for a speedy recovery.

Thanks to all of you.

I thought I would provide an update this week on her condition.

Last Friday, my sister was transferred to the burn unit at Sunnybrook Hospital in Toronto.

SJS is treated in the same way as a person who has been burned, and we were quite pleased when a bed opened up at Sunnybrook.

When I saw Lisa before she was sent to Toronto from the Royal Victoria Hospital in Barrie, her condition was in the initial phase. As the week went on, the nasty effects of SJS began to appear -ie; nasty blisters across her face and torso, legs and arms, as well as open wounds and scabbing.

While it was difficult to see, like something right out of a horror movie, there was some good news. We learned the blistering is part of the healing process, and if treated properly, the risks of permanent scarring are minimal. In addition, an opthamologist reported that there was only minor blistering on her eyes. SJS can cause serious eye problems, such as severe conjunctivitis; iritis, an inflammation inside the eye; corneal blisters and erosions; and corneal holes. In some cases, the ocular complications from SJS can be disabling and lead to severe vision loss.

However, the doctor seemed fairly confident that any threat to my sister’s vision was minimal.

By Saturday, Lisa finally agreed to visitation from immediate family members. Due to the wounds on her face, she was very reluctant at first to have anyone see her in that state.

Other than her husband and a very close friend, I was the first person to see her.

It took everything in my power to hold back the tears during the 30-minute visit. While I was torn up inside, I didn’t want to show my sorrow for fear it would make her feel worse than she already did. I wanted to be strong for her.

When I finally left the room, I couldn’t hold back my emotions anymore. As big brother, it’s always been my duty to protect my sister. I felt helpless.

SJS also causes sores in the mouth, tongue and throat, and there was debate about whether she would need to be put on a feeding tube. Getting proper nutrients is critical to recovery, and while it caused great pain and choking, Lisa kept downing the Ensure Nutrient Supplements as best she could.

We were told when she entered Sunnybrook that there would be a five-day window of concern that the SJS could worsen into a condition known as TENS (Toxic Epidermal Necrolysis).

Those fears ended Wednesday, as the doctors concluded the SJS was under control.

On Tuesday night, I went up to visit Lisa again, and while the scabbing and sores still looked awful, I could see some improvement.

I am hopeful this trend will continue for the next few weeks. Lisa is expected to spend up to two more weeks at Sunnybrook before being allowed to go home and continue her recovery.

In response to my column last week, I also received emails from people across North America who read it online and wanted to share their experience with SJS.

It was nice to hear from survivors who assured me that complete recovery is possible, although it does take time.

Others shared stories of the negative effects of SJS, specifically on the eyes, that were heart-wrenching.

Thankfully, my sister went to a hospital early enough and is receiving amazing care.

I’ve heard many people complain about the health-care system, but in this case, I can’t say enough about how my sister has been treated.

Lisa is a fighter. She is rightfully upset that this happened to her, and she has suffered a great deal, but I am confident we will be sitting around the cottage campfire in a few short months enjoying a beverage and counting our blessings.

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