Latina model raises awareness about toxic epidermal necrolysis, which almost killed her

According to John Hopkins Medicine, “Toxic epidermal necrolysis is a life-threatening skin disorder characterized by a blistering and peeling of the skin. This disorder can be caused by a drug reaction—often antibiotics or anticonvulsives.”

TEN can manifest itself in different ways depending on the person, but symptoms can include:

• A red area that causes pain and spreads quickly
• Skin peeling without blistering
• Raw areas of skin called erosions
• Spreading of the condition to the eyes, moth, throat, and genitals

Treatment depends on the individual and their particular circumstances including age, general health, medical history, and so forth. Treatment often includes hospitalization in a burn unit, discontinuation of any medication that might be causing the reaction, isolation to prevent infections, ointments, bandages, intravenous fluids and electrolytes.

It took months for Amber to share what happened to her, but on April 15, 2020, she felt strong enough to post a picture of herself that shows how her skin has been affected. She also wrote a lengthy caption explaining what she went through. We’ll let her describe in her own words what TENS put her through.

after months of holding onto this picture i’ve come to a place where i finally believe I am ready to share my story. as i’m sure you can imagine; nothing about this was easy so please bear with me and try to be understanding as this may be fairly overwhelming for me.

She wrote: "In november of 2019, i visited the er for what i believed was a minor allergic reaction but after a few days under close monitoring the doctors came with a diagnosis no one expected. my family and i were told i had a one in TWO million underlying condition which had been triggered by an unknown cause called steven johnson’s syndrome or TENS( toxic epidermal necrolysis)."

She explained TENS caused her body to shed the top layers of skin until doctors removed 80% of it through a very difficult surgery. "Along with my skin, i lost nails, all hair on my head and body and most of my vision," she wrote. She spent seven weeks in the ICU burns unit, fighting for her life.

i combatted cardiac arrest, hypothermia, potential infections and of course the healing process in itself. a second procedure was done to ensure that i could breathe by successfully completing a tracheotomy and connecting me to a ventilator.

She says she doesn't remember much of what happened because she was in a coma, unable to communicate, and her eyes were taped shut.

on christmas day, i was able to speak again. the first thing i did was call my mom and wish her a merry christmas, i’ll never forget the shock on the other end of the phone. that same day i ate my first solid meal and took my first steps. my will to leave the hospital as soon as i could kicked in and sure enough i was released home 3 days later.. emotionally the toll all of this took on me was almost unbearable but i can say i am still on the road to a full recovery and it’s beautiful.

Because Amber mentions both Stevens-Johnson syndrome and TEN, we wanted to clarify that Stevens-Johnson syndrome is considered to be a less severe form of the same condition, meaning it affects a smaller percentage of the body than TEN does.

Here's how she described it:

"I’m healing both inside and out one day at a time. being honest, it isn’t always easy waking up looking different than i did before, or not being able to complete simple tasks because i can’t see well. i have great days and then theres others i can barely roll over in bed. i’m learning to be patient though, a value i always lacked but knew i needed. In so many ways i’ve had to trust God and believe in His plan. i know i went through this for a reason, maybe to slow me down, maybe so someone else could learn something.. who truly knows. what i do know is i refuse to turn this new leaf in my life unchanged. i’m taking the time to really learn myself. this way, regardless of my outer appearance, i will love myself for me flaws and all. i will take care of myself and do what’s in my best interest because i deserve it."

After being asked by many if she is fully recovered, Amber wrote:

"I always get a lot of questions regarding my healing process and if I’m fully recovered but to be as transparent with you all as possible the truth is… I have no idea what’s next. One day maybe I will post the stages of my recovery so you all can see exactly how gradual this process can be. My color comes in faster in some places than others so sometimes it’s hard to tell a difference without frequent photos. Some studies say it can take anywhere from 6 months to a year to look like yourself again but instead of counting down the days I’ve decided to just let it rock. If I heal fully, great- If not, oh well at least I’m alive lol. Lately I’ve actually been feeling like I’ll miss this stage of healing if I do. It’s taught me to really love myself for not just my exterior but to appreciate all the parts of me I once looked over."

She put her feelings into words: "Honestly can’t lie and say that this hasn’t been a biiiiiig adjustment for me getting used to the new look BUT truthfully speaking I wouldn’t change a thing. part of me wishes I always looked like this so I didn’t have to go through the trauma of learning to love a new version of myself but im ok that i did bc the best kind if growth is usually uncomfortable. looking back on older pictures of myself is funny because I obviously recognize me and remember taking the picture but it doesn’t even feel like the same person anymore….inside or out. It’s almost like looking at a twin or what I would think an outer body experience feels like."

She went on to describe how she feels about the future: "I can’t help but look back and feel so artificial even though I never wore excessive make up/enhancements .even now it’s funny because if I wanted to I could put on make up to hide the changes but it doesn’t even feel right.. it’s like a mask. I keep telling myself I’ll wait till special occasion but then I think when is the right occasion to look like someone else…?"

According to Medline Plus, "About 10 percent of people with Stevens-Johnson syndrome die from the disease, while the condition is fatal in up to 50 percent of those with toxic epidermal necrolysis." As difficult as Amber's recovery has been, she is certainly one of the lucky ones.

Her story might be able to save someone else's life. If you suspect that you are experiencing either Stevens-Johnson syndrome or toxic epidermal necrolysis, please do not hesitate to seek medical attention.