By Tanita Matthews
THIS BRAVE man had to have his EYES STITCHED SHUT, his hands bound and his body covered in PIG SKIN after a rare virus left him burning from the inside out.
Jonathan Laird (38), an order entry specialist from Greenfield, Indiana, USA, was prescribed Lamotrigine, a branded version of the drug Lamictal, by his psychiatrist for ongoing depression in early 2016.
He was told that one of the possible side effects could be Stevens Johnson Syndrome (SJS) but was allegedly reassured that the risks were low.
Stevens Johnson Syndrome is a rare disorder caused by an unpredictable and adverse reaction to certain medications. It can also be caused by an infection.
Within a month of taking Lamotrigine, Jonathan began to feel unwell and on May 10 woke up to conjunctivitis in both eyes and flaking skin on his chest, symptoms that although were uncomfortable, were not immediately concerning.
“When you have this condition, it attacks your mucous membranes; your eyes, your mouth, and other areas,” Jonathan said.
“When I woke up in the (following) morning I felt some bumps inside my mouth with my tongue and I thought ‘well what is that? That’s weird.’ So, I got up, went into the bathroom and I looked in the mirror and I saw I had like three or four sores on my outer lips.
“They were like blackish red and when I opened my mouth and used my phone’s flashlight to see better, I could see in the back of my throat I had like two or three different bumps that were the same colour, like sores
“My eyes started to feel like they had little pieces of glass in them, it was very uncomfortable, and I was scared to touch them or rub them because it literally felt like I was going to cut my eyes
“I thought, ‘Is this Stevens Johnson Syndrome? I can’t imagine I would actually get this but is that what this is?’”
Jonathan drove himself to the hospital where a physician agreed that he had early Stevens Johnson Syndrome. He immediately stopped taking his medication.
Despite his symptoms, Jonathan was discharged and told to go and see his regular doctor and an eye doctor.
But within hours Jonathan’s symptoms had worsened- he had as many as 50 sores in his mouth and a rash had spread across his chest and back. He was admitted to the hospital where he stayed overnight.
The following day, Jonathan was transferred by ambulance to Harbour View Medical Centre in Seattle, Washington where he was placed in the Intensive Care Unit.
“When you have Stevens Johnson Syndrome you basically burn from the inside out. It starts as a rash and then the rash erupts into blisters,” says Jonathan.
“They stitched my eyes shut to protect my vision, they bound my hands together so I couldn’t rip the tube out that was down my throat.
“I don’t remember much. I fell in and out of consciousness. I felt like I was dreaming all the time, I don’t think I really knew that my eyes were stitched shut.
“I had to communicate with my parents with pen and paper because I couldn’t talk, so they would say something, and I would write (my answers).
“I said something like, ‘Am I going to die?’ because I didn’t know and that was really hard for them to read. I just looked horrible, I looked like a plane crash.
“They also put pig skin all over me and that’s to prevent infection. They were afraid I was going to get pneumonia at one point, so they had to make sure that everybody who came to see me had gloves on and gowns.”
Despite concerns for Jonathan’s life, he was eventually transferred to a burn unit after 11 days in the ICU. Doctors kept his eyes stitched shut for a further two weeks to prevent further damage.
For the first time in almost two weeks Jonathan could talk, eat and drink, but his struggles continued.
“Even simple things like going to the bathroom I couldn’t do without calling for a nurse. I felt very vulnerable,” continued Jonathan.
“One of the nurses I remember was amazing she took me into the shower so I could have my first shower in three weeks and I had to get naked in front of her, and I started crying, I just felt completely vulnerable. I was at this person’s mercy who had to guide me and bathe me and it was just a really weird feeling.”
On June 1 Jonathan was released from the hospital and has continued to recover ever since. His journey as a Stevens Johnson Syndrome survivor has led him to write a blog on the condition, in the hope that it will offer support to anyone affected by the condition.
“You’re not alone,” Jonathan said.
“Even though it’s a rare condition there are millions who have been affected by this, including children, and lot of people have survived and gone on with their lives, and you will to.
“Be brave and you’ll get through this, and the person you’re going to be on the other side of this is a much stronger person.”