Charleen survived SJS/TEN, here's her story
♡ Tell me a little bit about yourself.
My name is Charleen, 36 years old and I live in California (northern Bay Area). I have lived in California all my life and I work in Mental Health. I’,m married, no children, have a Golden Retriever and two cats (who are siblings).
♡ What caused SJ/TEN syndrome and how long ago was it?
I found out I had SJS/TEN on 2/22/2020 after experiencing symptoms the day before. About 2-weeks prior to my diagnosis I was prescribed Lamictal for Depression. My psychiatrist had warned me of some side-effects but told me they were rare. On 2/21 my eyes began to hurt but I just thought there was something that got into my contact lenses. I came home from work and changed my contacts, but my eyes were still bothering me so I ended up taking out the fresh pair and just wearing my glasses. The next morning my eyes were still bothering me and my gums were hurting. Then I went to take a shower and I noticed a rash on my chest, which I thought was a reaction to my necklace. My symptoms kept getting worse and I tried to go to Urgent Care but the wait was long. I called the Advice Nurse who recommended I go to the ER. From there I was in the hospital for the next 12-days. 2-days in the ER and the rest of my days at the Burn Unit at Santa Clara Valley Medical Center.
♡ Which symptoms did you have?
Itchy eyes, a rash appearing on my chest, discharge from my eyes, stomach cramps, diarrhea, sore gums.
♡ How was your experience with SJS/TEN?
At the ER, I feel like they weren’t really acknowledging the severity of my symptoms until I was transferred to the Burn Unit. The staff at the Burn Unit really took care of me though. I was seen by every doc there was! Internist, Opthamologist, Physical Therapist, Psychiatrist, Dermatologist, etc.
♡ How was your recovery process and were you followed by doctors afterwards?
It’s been slow. I didn’t want to look at myself or touch my skin. When my husband would help me lotion up, I kept my eyes closed. When I showered, I was scared to look at the rag and see all my skin. It was really hard. I found myself to be repulsive. I still have a hard time looking at my skin and touching it.
♡ After leaving the Hospital, which side effects did you have and feel?
Fatigue, muscle fatigue from not moving a lot. I didn’t have any more open blisters so I was taught wound care and was able to go home but I felt like I brought back so many supplies and meds from the hospital. It felt like I took home the whole pharmacy!
♡ Which were the highest and lowest parts of this experience?
The best part – all of my friends and family who expressed concern and reached out, sent flowers, etc.
The worst part – the long process of healing. All the after-care, being cautious in the sun, etc.
♡ After leaving the Hospital, which side effects did you have and feel?
Fatigue, muscle fatigue from not moving a lot. I didn’t have any more open blisters so I was taught wound care and was able to go home but I felt like I brought back so many supplies and meds from the hospital. It felt like I took home the whole pharmacy!
♡ How was your recovery process?
It’s been slow. I didn’t want to look at myself or touch my skin. When my husband would help me lotion up, I kept my eyes closed. When I showered, I was scared to look at the rag and see all my skin. It was really hard. I found myself to be repulsive. I still have a hard time looking at my skin and touching it.
♡ How did this disease change your outlook on life?
It makes me more cautious of what I put into my body, including meds, etc. It makes me look into the background of doctors first and to educate myself on what is being prescribed to me.
