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Jane’s story

Updated: Jul 10, 2023


My name is Jane Grady and I’m an SJS/TEN survivor. I was prescribed a medication for seizures. Following the prescription directions, I took ½ tablet in the morning and ½ tablet in the evening from January 9 through to about January 17, 2014. By day 6 or 7 I noticed a rash developing on my skin. I tried phoning the specialist who prescribed the medication. My first phone call was a busy signal. I left two messages explaining my concern that something was desperately wrong with my reaction to this medication. When I finally connected with the secretary, she informed me to continue taking the medication. I expressed my concerns over my state of health due to taking this drug. The specialist never phoned back or made any attempt to contact me.

I went to my family doctor on January 18th and he asked, “Do you have a rash on your mid-section and back?” I did. I explained the something was very wrong with my reaction to this medication. Further, I had been trying to contact the original doctor who prescribed the medication and I could not reach him. I asked my family doctor to please talk to him and try to help find out what is going on with the medication. He refused to talk or consult with other doctors. I was told by my family doctor to continue taking my medication until it was finished.

That night, I phoned an ambulance. It was after 8 pm when they arrived. I was having difficulty thinking and was getting worse by the hour. I chose to stop taking the medication by day 7. The local rural hospitals were closed by 8 pm. I was asked if I wanted to go to Truro or Amherst. I was not capable of making a decision as I remember not being able to sort out the information I was being asked. The medication had completely frozen my thoughts. I was unable to give them an answer, so I was asked to sign a release form and they left even though they could see I was clearly very sick. They took my vitals and I know they would not have been normal or within the realms of normal. They left.

The next morning, I drove myself to the hospital in the small village of Tatamagouche 30 km away. I was very sick. I was sent by ambulance to ICU QE11 Halifax by noon. I was in ICU for several days, then moved to a private room due to my immune system being compromised. During my stay in the hospital, I gave permission to allow residents, qualified doctors and nurses to visit me to “look and see”. As it was explained, some healthcare providers have worked there 30 years and had never experienced SJS overlapping TENS.

As time dragged on, my skin blistered and peeled off. My mouth and nose were crusted and sore. Swallowing was difficult. Mashed foods and liquids were my diet. I had lost sense of taste and smell and my tongue was swollen with deep lesions on the upper surface. It was extremely painful. I had creams applied, skin wrapped and was given an air bed. My lady parts were also compromised with blisters. My whole body was swollen. When I got out of hospital my skin continued to peel off, my toenails and fingernails fell off.

Swallowing food is still something of concern when eating. Hot food and drinks are difficult to consume due to the sensitivity of my mouth. Sores are constantly appearing inside my mouth. My nose constantly drips and is often stuffed up and my lips get very sore. I have frequent ear aches and water retention in my ears after swimming and showering. My hair is constantly falling out. Although somehow, I still seem to have a decent hair volume. My fingernails and toenails are painful. The soreness never goes away. Any sort of insect bite or sting tends to bother me more than it did in the past. I must keep my nails short as that helps subside the pain. My toenails seem to want to grow into the sides of my toes. My fingers are also sore, giving me an almost numb feeling. My eyes are constantly sore, my skin still very sensitive. I must wear full sunscreen, sunglasses, and UV filter clothing and hat to go outside and while swimming and driving in the car. I suffer from constant inner chills and will have days when this affects me to the extreme. During those episodes, I go to bed and put my electric blanket on to try and bring my body temperature up. I find it very difficult to function when this happens. I also have times of extreme tiredness at which time I need to lie down and sleep for several hours during the day.

I still do my favourite things and basic survival day to day tasks around the house. I bake, grow a veggie garden, cook my meals and work on my Illustrated and Visual Artwork. I have been very lucky to be able to and remain determined to continue to make new art. I swim almost every day in the summer to early fall in the Northumberland Strait NS on my beach. I walk my little dog which I got just 5 months after coming out of hospital. When I was in hospital, I asked to get help to get up and walk despite my tender and extremely swollen feet and body. The first time the physio held me, I could not make it to the door. Gradually, I was able to walk with the help of my cane around the nurses’ station. I am a determined person and make myself push through barriers. My parents overcame many setbacks and trauma from serving in the military and living through war and economic depression. I suppose this has stayed with me.

What I find difficult at this time is the lack of knowledge about SJS/TEN. This lack of knowledge and communication between pharmacists filling prescriptions, nurses looking after you in hospital or delays in diagnosis made by family doctors and specialists. There seems to be the assumption that once you have had this syndrome that you are fine and there is no need to use precaution with taking medicines after the fact. This leads to the misconception that any side effects that I described above are, as I have been told “all in my head”. Therefore, the only solution is to see a psychiatrist. In my view, this is unacceptable.

Getting help with counselling to help alleviate fears and anxiety seems to be an ongoing concern with most that have experienced this syndrome.

Each person is different in culture, mental strength, immediate surrounding support, other circumstances, along with the degree of the physical effects. I greatly encourage family doctors to have more training and greater awareness that may help patients find better resources to deal with their immediate SJS/TEN symptoms. Follow up appointments with the doctors that treated the SJS/TEN patients in hospital may be one solution to help provide more consistent care with on going out patient services. A greater awareness on prescribing medications is needed. Making sure the pharmaceutical companies give proper explanations as to what the medications actually can do or the possible actual reactions instead of describing it in vague terms such as, “it may give a rash on the torso and back. If this happens go to emergency”. If that is the only information the doctors and pharmacist are getting trained with, it leaves them in a compromised position.

My overall experience in the care and treatment I received at the hospital was greatly appreciated. I am now a part of a group of global survivors who use ZOOM to talk, email, encourage and support each other on a regular basis. We have guest speakers that share with us a wealth of support and knowledge along with giving us the chance to ask questions. We have been privileged to have doctors and residents join our group and share their expertise. They are greatly valued. Thank you.

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