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My 19-year-old daughter died of toxic shock syndrome. Here is my appeal to the legislators.



It was late March 2017, when Madalyn Massabni returned from college to spend her 19th birthday with her mother.

Dawn Massabni, mother of two from Rumson, New Jersey, said she was looking forward to celebrating with Maddy, whose smile could brighten a room.

At the time, Maddy studied fashion at Lynn University in Florida and dreamed of working behind the scenes at fashion shows.

"She dressed as she wanted and didn't fear judgment. She did a little modeling and loved it," Massabni told "Good Morning America." "She was on the cover of a magazine. And her favorite thing to do was being on the beach – even in winter, she packed her bags.

"She had a contagious laugh, so when she came in, people would say," Oh, Maddy is here. "

& # 39; I miss hearing, "I love you, Mom"

On March 27, Maddy's birthday, she and her mother went out to dinner. Massabni said Maddy was not feeling well when they got home. Maddy became ill but rested in the hope of getting better.

"I said, 'Let's go see the doctor early in the morning,'" Massabni recalled. The next morning she could barely answer and could not speak. I don't even know if she knew who I was and I called 911 right away. "

Massabni said the rescuers had arrived at his house, but at that moment Maddy had a seizure.

"I was holding her and she looked at me and closed her eyes … I was screaming," I love you so much. Please don't leave me, "said Massabni. "She had a heart attack in her arms and stopped breathing."

Maddy was taken to the hospital and doctors tried to revive her. The next day, the adolescent's health worsened. Her family made the decision to remove the fans and she died on March 30, three days after her 19th birthday.

Crying Massabni said life has not been the same for her and her son Georgie since losing Maddy.

"The three of us were very close, extremely close. She talked to Georgie several times a day. They did everything together," Massabni said. "He had to say goodbye to his sister. I don't know how he graduated, but he did. He went to college and when I asked," Why? "He said," I I want to make Maddy proud. "

"It's been torture and hell since the day she left me," he added. "I miss her so much. I miss listening to & # 39; I love you, Mom & # 39;".

Maddy had her period throughout her sudden illness and wore tampons. Its official cause of death was Toxic Shock Syndrome, Massabni said.

What is toxic shock syndrome?

Toxic Shock Syndrome is a rare but serious disease caused by some types of staph bacteria. Not all cases of TSS are tied to tampons, but women who use them are at greater risk. Women who are not menstruating, men and children can also get TSS due to infections associated with skin or surgical wounds, according to the National Organization for Rare Disorders.

The American College of Obstetricians and Gynecologists has told the GMA that leaving a tampon in the vagina for too long is a risk factor associated with TSS. In some cases, TSS may result in finger, toe or limb amputations, or even death.

According to the National Biotechnology Information Center, it is estimated that menstrual and non-menstrual TSS cases range from 0.8 to 3.4 per 100,000 people in the United States. If left untreated, it can be fatal.

"Although mortality rates have declined over the past two decades, they still range from 1.8 [to] 12%, "states NCBI on its website." For patients misdiagnosed or late in treatment, mortality may exceed 50%. For this reason, health professionals should be aware of the disorder and, even if they do not manage it, should be able to refer them immediately. "

ACOG recommends that women change tampons every four to eight hours.

Jacques Moritz, medical director of the Aunt Women's Health Clinic in New York, told the GMA that it is also important for women to learn early signs and symptoms of TSS to recognize it as soon as possible.

"The culprit seems to be these super absorbent tampons and seems to be time related, meaning the longer it goes, the more likely it is to happen," Moritz said, adding that there are not enough reliable studies of TSS in association with tampons. "Bacteria cause this. [If] The super absorbent will stay longer, the more you can forget it's inside. And if you don't have leaks, women can forget about it. "

Here are the potential symptoms of TSS, according to Moritz and ACOG:

Low blood pressure

Fever

A rash on the palms, soles, or anywhere on the body that looks like a sunburn.

Body pain

Vomiting

Diarrhea

Confusion

& # 39; It's a horrible death that can be prevented & # 39;

Since Maddy's death, Massabni has been on a mission to educate women and girls about TSS and the safe use of tampons by speaking in schools and universities.

Its 501C3 foundation, Don't Shock Me, was created in honor of Maddy to spread the infection.

On November 14, Massabni met with the Food and Drug Administration to discuss possible new regulations for tampon manufacturers.

Currently, the FDA Code of Federal Regulations on Menstrual Tampon Labeling states that if the risk of TSS, warning signs, and information about seeking medical attention is "included in the package leaflet", the following alert should appear as follows: legible on the package label:

"Warning: Tampons are associated with Toxic Shock Syndrome. TSS is a rare but serious disease that can cause death. Read and save the attached information."

Massabni is asking the FDA to include a bigger and bolder warning on all the boxes, along with signs and symptoms of TSS on the inner flap – not just on the paper leaflet, which girls are probably throwing in the trash, she said.

"Have [bold] warnings for things like cigarettes, alcohol and drugs – we want tampons to have the same kind of warning, "said Massabni." It is a horrible death that can be avoided. Families do not recover from this. I want her back. "

Although there are no specific guidelines, Moritz agrees that the following could help prevent TSS when using tampons:

1. Use less absorbent tampons

2. When your flow is more intense, change your cap more often.

3. Alternate with menstrual pads

4. Never be ashamed to go to your doctor, emergency room or urgent care center if you have symptoms or forgot to remove your tampon, Moritz said.

Massabni is also struggling to get "Maddy's Law" passed in his county, which would force fifth graders and higher grades to have TSS briefing sessions. She is asking anyone with experience in TSS to contact dontshockme.org or via dontshockme19@aol.com.

"I know Maddy would be very grateful for saved lives," said Massabni. "If she had been through this, she would be doing exactly what I am doing."

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