GRAND RAPIDS, Mich. — A West Michigan woman is grateful to be alive after being diagnosed with a rare and serious skin condition known as Steven’s-Johnson syndrome, or SJS, in November of 2019 — now five years ago.
Sacha Hill has always wanted to share her story, hoping to raise awareness and change as many lives as she can.
After being diagnosed with SJS, Hill said she's thankful to wake up every day, and said she looks in the mirror and says, “Thank you, God.”
At 21 years old, Hill said she noticed something was wrong when she started having blisters from head to toe.
It was after many visits to the doctor’s office that she was diagnosed with SJS.
Hill said doctors planned a palliative care plan for her because they didn’t know how long she would live. She said what scared her the most was leaving her then 1-year-old daughter, Cambrielle, behind.
“I’m very fortunate to be able to raise my daughter and tell her my story and tell her that I beat something that was supposed to end me,” Hill said.
Now 27 years old, Hill said since overcoming SJS she has a new outlook on life and some of the simplest things she used to take for granted.
"Hearing that I was facing death or that there's a chance that I may lose my life to this disorder really opened up my eyes to life and to live life,” Hill said.
When struggling with SJS Hill had blisters from head to toe, blurred vision, a fever, body aches and rashes.
Her health started declining to the extent that doctors sent her lab information to the Mayo Clinic for review, but it was an eye doctor in Grand Rapids who she thanks for saving her life.
“It actually was an eye doctor who diagnosed me and told me that I had Steven’s-Johnson syndrome and the treatment to follow, so you saved my life,” Hill said.
Chicago area board-certified dermatologist Dr. Elizabeth Kiracofe, MD said those taking certain medications shouldn’t be alarmed by the condition.
“I would say to the general public SJS is not something you want to be worried about if you're taking a particular medication, but what you do want to make sure is if you ever develop discomfort in the eyes, trouble swallowing, and blisters in the mouth, you know that you seek medical care immediately,” Kiracofe said.
Hill is now healthy with two young kids and works as a medical assistant to become a registered nurse. She said she wants to help save lives and raise awareness for others with SJS.
Hill also said the team who worked around the clock to save her life inspired her to pursue a career in the healthcare field.
“My message is to be aware and ask questions, ask about the hard symptoms that may come with taking a drug,” Hill said. "In my case, I wasn't made aware of those symptoms, and I wasn't aware of what could possibly happen to me.”
Hill said she helped save a life in India, after a woman saw her post and reached out, who was also diagnosed with SJS.
She said she also has a message for the staff at Spectrum Health-Butterworth who saved her life.
“Thank you for saving my life, thank you for encouraging me and inspiring me to be strong and resilient. I think I’m a better mom because of it honestly,” Hill said.
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