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Cape Coral woman shares story of rare illness

By Staff | Nov 13, 2014

Cape Coral resident Michelle Frazzetto has published a book about her experience as a victim of the rare and deadly Stevens Johnson Syndrome/Toxic Epidermal Necrolysis (SJS/TEN). The book is titled “Still Wearing My Heels.”

Frazzetto’s SJS/TEN was an adverse reaction to a commonly prescribed drug. First symptoms included fatigue, fever, swollen throat and the general body aches associated with an upper respiratory infection. Undiagnosed, the SJS progressed rapidly to the extreme severity of TEN, or Toxic Epidermal Necrolysis-in literal translation, “poisonous death process of the skin.”

Born in Staten Island, NY, the fourth child of Italian immigrants, Frazzetto, at 21, was living the good life. She had both the man of her dreams and her dream job with a brokerage firm in Manhattan.

“My life was just beginning,” she said.

And then a bicycle accident induced a seizure, which put her in the hospital. The resulting misdiagnosis of epilepsy and a prescription for phenobarbital ended her life as she knew it.

Frazzetto’s body blistered as if burned and sloughed off her body, taking her hair and nails with it, and scarring her eyes. When her bodily organs began to fail, she was put into a medically induced coma for months. When she came out of the hospital, she weighed 64 pounds. Years of physical therapy followed before she could even walk again and nearly three decades later, she endures chronic pain and illness from the damage sustained by her limbs and internal organs.

“My body today doesn’t function like normal person. All my organs are scarred because when I was burning on the outside, the insides were burning as well. Nothing works right. I am always physically ill because my immune system is compromised. I can’t digest food properly. I have no salivary glands and my mucus membranes are damaged. I have severe COPD (Chronic Obstructive Pulmonary Disease.) I develop little cysts in my ears and have to go monthly to have them removed.

“And obviously, I’m blind. The surface of my eyes burned and my eyelids stuck to my eyeballs. When I first came out of the coma, things looked fuzzy, but I was 21. I was not aware of the severity of it all. I figured everything would get back to normal eventually. It was years before I finally realized that it was not going to happen.

“After my first eye surgery, I was very hopeful I would see again, but (after multiple surgeries) if this last one doesn’t work, I won’t try again. I’ve gone to the best doctors all over the world, chasing my eyes. I want to see something bad, but at this point, I’m just trying to preserve what I have.” (Frazzetto can still see some light in one eye.)

Frazzetto believes that the reason she has suffered from SJS/TEN is to educate people about the disease.

“It took me 28 years to write this book. I kept quiet for too many years. I didn’t want to deal with it. I didn’t want to have to relive it. I didn’t want my mom to relive it. But four years ago, I was in a deep depression. I had hit rock bottom again. I felt I had so much to give, but my life was going nowhere. I offered to do volunteer work but nobody wanted me because I was blind. People kept saying I should write book, but I thought, how can I write a book?”

Three years later, with the help of JAWS, a computer software program for the blind, and the steadfast dedication of Bokeelia editor, Denege Patterson, Frazzetto has published her book, “Still Wearing My Heels.”

“Although it hurt me and my mother to write it, the purpose of this book is to make people aware. I see it happening much too much now. Children are suffering. Little kids are suffering this from taking Motrin, Tylenol,” Frazzetto exclaimed, her voice rising in anger. “They should make people more aware. It’s not just the silly warnings you hear on TV, like your tongue may swell and you may get a sore throat. It’s already too late when that happens! Why don’t they say it can be fatal! They are killing people!”

With the help of her friend, Karen Wallis, (“she is my eyes”) Michelle designed the cover for her book right down to the font type and colors. “If it weren’t for this woman and the laughter she brings me” Frazzetto shook her head with mounting amusement. “You know what she said to me the other day? She said, ‘Michelle, I’ve decided.’ What have you decided? ‘We’re going to live on the edge!'” Michelle screamed with laughter. ” ‘ We’re not going to the doctor today. WE’RE GOING TO THE BEACH! ‘” Frazzetto flipped a dismissive hand. “Oh yeah. OK,” she laughed.

“I love her. She is my family. We are always there for each other. When she’s blue, I say silly things to pick her up. When I’m blue, she’ll say, ‘Just look in the mirror and laugh at yourself.'” Frazzetto is shouting again with laughter. “What the hell you put me in front of a mirror for? I’m blind!”

When she has stopped laughing, Frazzetto says seriously. “God has blessed me with the best people in the world. My friends are incredible. They respect me, they take good care of me. It’s amazing how people come into my life. I put a fingerprint on their heart and they remain.”

Although her friends and family have supported and sustained her both physically and emotionally, Frazzetto says that she is alive because of her mother.

“She never left me. I survived because of her.”

When Frazzetto first entered intensive care in the burn unit, the doctor told her family to go home. “This is going to be a long journey if she makes it at all. We’ll call you.” But Frazzetto’s mother Paola, a fierce little Sicilian, got to her tiny feet and announced, “I’m not going anywhere.”

Today, although Frazzetto lives in her own home, her mother lives nearby and continues to cook “with love” for her daughter.

The 1985 Firebird that Frazzetto drove nearly 30 years ago, before her accident, is still in her garage.

“I won’t give it up,” she says, “cause one day I WILL DRIVE IT.” She grins and then says soberly about the loss of her eyesight. “At this point, I will accept just the light, because I don’t want to be in total darkness. That scares me to death.”

Frazzetto’s passionate gratitude for the love and devotion of her mother, her family, friends, doctors and nurses, her moments of honest, emotional pain, and her occasional bursts of righteous anger are undone by her irrepressible sense of humor. Graceful and poised, one long leg crossed over the other, Frazzetto looked down at her foot and wiggled it.

“Some of my toes are a little scrunched up, but listen,” she laughed, “I’m wearing my heels and that’s all that matters.”

To attend one of Frazzetto’s upcoming book signings, to purchase a copy of her book online, or for more information about SJS/TEN, please go to www.michellefrazzetto.com.