She was close to death’s door but miraculously she was able to turn around and return to her Milton home with a new lease on life after weeks of hospitalization with a rare disease.
Sonia Whyte-Croasdaile (nee Cornish) describes herself as a “miraculous makeover” after she was diagnosed with the disease – Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) – a severe, acute, life-threatening mucocutaneous reaction. The disease is named after Albert Mason Stevens and Frank Chambliss Johnson, American pediatricians, who jointly published a description of the disorder in the American Journal of Diseases of Children in 1922.
She told The Camera that had it not been for constant prayers together with the diligent doctors and nurses and the support of her husband, family members and church members, she would not be alive today.
“With this disease, time is of the essence. I was coughing up and there were sores all over, so the same way I had blisters on the outside of my body, inside of my mouth and throat were covered with the same blisters so I was burning from the outside and burning from the inside out. At one time I was coughing so badly and my sister was there. I said to her take it out take it out. She was just in time to push her finger in my mouth with a gauze and she grabbed something; what we later found out was the lining of my throat that came out on her finger, so had that gone down, probably I won’t have been here today,” she said
But what makes Whyte-Croasdaile’s story more captivating is the fact that when she fell ill, she first thought she had the flu as the symptoms were similar. But her condition worsened with high fever, red, itchy and swollen eyes. At a walk-in clinic the doctor treated her for pink eye.
A few days later the symptoms she was experiencing were compounded with blurred vision, her temperature was rising quickly and sores started to appear in her throat. It was then that this Jamaica-born woman had to be taken to Milton District Hospital’s (MDH) Emergency Department. At first the medical staff was baffled with her condition and according to her, it took doctors a few days before they diagnosed her with Stevens-Johnson Syndrome.
The former beauty pageant top-10 contestant spent six-weeks in hospital during which she had become unrecognizable with severe burns on her body, sores in her mouth and throat. She could not eat, which resulted in doctors having to feed her through her nose.
As a nurse herself who worked with Red Cross Society prior to the illness, she said she was depressed but rather upbeat. “I was told after I came out of the hospital that I was so strong that I was encouraging people. One of the things is that I remained in close contact with God because I was praying for the most part and I felt safe. I knew I was ill. I didn’t know to what extent or how bad I was even looking because I could not see. (Her eyes were closed as a result of the disease) I guess they had given me so much pain medication, I felt relaxed and not feeling an awful lot of pain that would cause me to think that I was going to die… I knew from the conversations with the doctors around me that this illness was new to them and I knew it posed a challenge….I made a conscious effort to take a mental note of everything that happened to me and that as soon as I come out I will write it down, so I have books upon books about my story. “
According to her husband, Joseph Croasdaile, the burns were so severe that she was transferred to the burns unit at the Hamilton hospital. “After a few days it (the burns) started to get better they sent her back to Milton.”
He added that after she was discharged from the Milton hospital she was still very ill. “The skin in the palm of her hand had came right off and the soles of her feet, that too peeled off.”
Her skin was shedding, her hair on her head, eyebrows and lashes were falling off as well as her finger and toe nails, Joseph said, adding that her body parts were “falling apart.” Sonia chides in by saying she had a “miraculous makeover” with a giggle.
Throughout the entire ‘ordeal’ Joseph did not shrug his responsibility in the vows he took when they were married. He says he shed a lot of tears. At one point he thought he had lost his wife. “She was in the optician’s chair and he was cleaning her eyes and the pain was so much that she went out. She was motionless and I thought she was gone. To back me up, the nurse thought so too. I went blank; I didn’t know what to say and what to do,” he said.
Whyte-Croasdaile added that after she was sent home, there was no support.
“The hospital discharged me to my family doctor who didn’t know anything about Stevens Johnson syndrome and there was nobody in my circle of care that knew enough of anything to tell me what was happening, so I basically felt that I was sent home to die because my body was falling apart. Nobody told me to expect this to happen and then there was no support. That’s the reason why I decided that the next person who is diagnosed with the disease should not go through this on their own.”
As such, she has created the Canadians Against Stevens-Johnson Syndrome and TEN (CAST), which provides online assistance to people and families who have been diagnosed with the condition.
She’s hopeful the support group will provide others who find themselves in her position — lots of questions and little hope — with answers, hope and education.
Whyte-Croasdaile added that not everyone who gets the disease would suffer to the extent as she did. She had the worse form called Toxic Epidermal Necrolysis (TEN), where 98 per cent of her body was burnt with the exception from her knee to the ankle.
This Adventist believer condemns any notion of ‘obeah’ as it relates to the disease saying that she knows someone who was taken to “an obeahman” and was left to die because that belief would not be in the best interest of healing.
Though she describes herself as having a new outer body, the scars within are still very much there. She does not have the same energetic, full of life personality as before. Despite she struggles with sensitivity to heat and cold on her skin and feet, she now has to wear specialty footwear. Her sight is also easily blinded by light both indoors and outdoors.
She had also developed a disease that dried up her mucous membrane. “I have to use mouth and nasal sprays just to keep moisture in my mouth and nose. Because of that, it’s very hard to eat certain foods. I’m gaining some weight now but it’s very hard to be properly nourished because everything is so difficult to swallow. Everything I put in my mouth even milk based products feel like pepper.” When she left the hospital she weighed 96 pounds and her weight before the illness was around 120. Now her weight has increased to 112 pounds.
If you are interesting in volunteering, donating or supporting CAST you can phone 416-254-6543 or email firstname.lastname@example.org