I was diagnosed with TEN in early 2016 when I was 28 years old. I was 5th grade teacher at the time, I loved hiking and bike riding, and I was very active in my school community and my church.
Initial Symptoms
I was taking a combination of prescription medications to help regulate my mood when I started having several eye issues. They became red, itchy, and felt as if they were burning. I went to an eye doctor who prescribed eye drops. My eyes didn’t get any better, and I started to develop flu-like symptoms. I also noticed numerous red spots that covered my arms. Painful blisters started to appear on my lips and inside my mouth, which made it unbearable to eat.
In the Burn Unit
After a few days in the ER, I was transported to a burn ICU, where I stayed for three weeks. I was essentially unconscious for the first two weeks, and when I awoke the third week, I saw my body wrapped in bandages from head to toe, completely covered in second- and third-degree burns. I was told I had survived Toxic Epidermal Necrolysis and that over 85% of my epidermis and all of my mucous membranes were affected.
Recovery
Upon discharge from the burn unit, I was assured that everything should be fine moving forward. But within the following days, weeks, and months, it was very clear that things were not fine. My entire epidermis continued to shed like the skin of a snake. My lips and other mucous membranes were patches of raw, bloodied scabs. Chunks of skin fell from my eyelids, ears, mouth, scalp, hair, and every single fingernail and toenail sloughed from my body. I remember just sitting and crying on the bathroom floor staring at a chunk of skin in the shape of part of my foot that had just sloughed off.
Life After TEN
After five years, I am still constantly reminded of my TEN sequelae, which includes complications with my nails, skin, eyes, esophageal tract, vulva, psychological well-being, and general activities of daily living.
Most of my fingernails and toenails are still missing, as the nail matrices were destroyed. The nailbeds are extremely sensitive, and the little slivers of nails that have grown back can be very painful, especially when they get caught on things. Raised scarring and new moles from the burns developed on my back, and the scarring on my face required special laser treatment.
While I am grateful to have my vision intact, there are several other ocular complications, such as eyelashes growing in the wrong place and in the wrong direction, extreme dryness and redness, pain, and severe meibomian gland dropout, all of which require ongoing procedures and treatments. I have found some relief through wearing custom Prose lenses and by having the lashes either pulled manually or electro-epilated. Just managing my eyes adds about two hours to my daily routine.
Another impact of TEN was salivary gland damage, which has caused increased dryness in my mouth, and requires me to frequently clear thick mucus from my throat.
TEN also caused vulvar sequelae, which requires ongoing pelvic physical therapy and the use of various topical creams. These complications also impact relations with my husband. During the first four years after TEN, the vulva was so sensitive that I was unable to ride a bike or wear certain pants due to the large seams in the pelvic region. I am still unable to use tampons during my menstrual cycle.
Support for Survivors
Ultimately, the psychological and emotional impact of this trauma has proved to be the most challenging aspect. For those coping with the effects of SJS or TEN, be sure to find a support group! I attended an international SJS/TEN conference, where I networked with medical professionals, met other survivors, and found an SJS/TEN support group, which is making an incredible difference in my journey of healing.
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