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My 19-year-old daughter died of Toxic Shock Syndrome. This is my request to MPs.



It was the end of March 2017 when Madalyn Massabni flew home from campus to spend her 19th birthday with her mother.

Dawn Massabni, a mother of two children from Rumson, New Jersey, said that she wanted to celebrate with Maddy, whose smile could illuminate a room.

At the time, Maddy was studying fashion at Lynn University in Florida and dreamed of working backstage on a stage performance.

"He dresses according to his wishes and is not afraid of being judged. He does a little modeling and he likes it," said Massabni, "Good Morning America." "He's on the cover of a magazine. And his favorite thing is being at the beach – even in winter, he's bound.

"He laughed contagiously at this, so when he entered, people would say, 'Oh, Maddy is here.'

'I miss hearing, "I love you, ma'am."

On March 27, Maddy's birthday, he and his mother went to dinner. Massabni said Maddy was not feeling well when they got home. Maddy was sick, but rested in hopes he would get better.

"I said, 'We will go to the doctor first thing in the morning,' recalled Massabni." The next morning he could not respond to me and he could not speak. I don't even know if he knows who I am and I immediately called 911. "

Massabni said that the first respondent came to his house, but at that time, Maddy had experienced a seizure.

"I carried her and she looked at me and closed her eyes … I shouted, 'I really love you. Please don't leave me,'" said Massabni. "He had a heart attack on my hand and stopped breathing."

Maddy was taken to the hospital, and doctors tried to revive him. The next day, the teen's health turned into the worst. His family made the decision to remove the ventilator, and he died March 30, three days after his 19th birthday.

Massabni who cried said life was not the same for her and her son, Georgie, since losing Maddy.

"The three of us are very close, very close. He will talk to Georgie several times a day. They do everything together," said Massabni. "He had to say goodbye to his sister. I don't know how he graduated, but he did. He went to graduate school and when I asked him, 'Why?' He said, 'I am want to make Maddy proud. "

"It's been torture and hell since he left me," he added. "I miss him so much. I miss hearing, 'I love you, Ma'am.'

Maddy experienced menstruation during her sudden illness and used tampons. The official cause of death was Toxic Shock Syndrome, said Massabni.

What is Toxic Shock Syndrome?

Toxic Shock Syndrome is a rare but serious disease caused by several types of staphylococcus bacteria. Not all cases of TSS are related 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 related to skin injuries or surgery, according to the National Organization for Rare Disorders.

The American College of Obstetricians and Gynecologists say "GMA" that leaving tampons for too long in your vagina is a risk factor associated with TSS. In some cases, TSS can result in amputation of fingers or toes or limbs, or even death.

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

"While mortality rates have declined over the past two decades, they still vary from 1.8 [to] 12%, "NCBI states on its website." For patients whose diagnosis or treatment is delayed, mortality can exceed 50%. For this reason, healthcare workers must be aware of the disorder and even if they do not address it, they should be able to make an immediate referral. "

ACOG recommends that women should replace tampons every four to eight hours.

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

"The culprit appears to be this super absorbent tampon and seems to be time related, which means the longer the chance, the more chance there will be," Moritz said, adding that there were no reliable studies of TSS in relationships. with tampons. "The bacteria that cause it. [If] the super absorbent will last longer, the longer you can forget that it entered. And if you don't have a leak, women can forget. "

The following are potential symptoms of TSS, according to Moritz and ACOG:

Low blood pressure

Fever

Rashes on the palms, soles or places on the body that look like sunburn

Aches

Throw up

Diarrhea

Confusion

"This is a terrible death that can be prevented & # 39;

Since Maddy's death, Massabni has made it his mission to educate women and girls about TSS and the safe use of tampons by speaking at schools and universities.

Her 501C3 foundation, Don't Shock Me, was created in honor of Maddy for spreading awareness about infections.

On November 14, Massabni held a meeting with the Food and Drug Administration, to discuss potentially new regulations for tampon producers.

At present, the FDA's federal regulatory code for labeling users for menstrual tampons states that if TSS risks, warning signs, and information about when to seek medical care are "included in package insertions," then the following warning will appear clearly on the package label. :

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

Massabni asked the FDA to include a bigger and bolder warning on each box, along with the signs and symptoms of TSS on the inside of the fold – not just on paper inserts, which girls might throw in the trash, he said.

"There is [bold] "Warnings for things like cigarettes, alcohol and drugs – we want tampons to have the same kind of warning," Massabni said. This is a horrible death that can be prevented. The family did not recover from this. I want him back. "

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

1. Use tampons with lower absorption

2. When your flow is heavier, change your tampon more often

3. Alternative with menstral pads

4. Never be ashamed to go to a doctor, emergency room or emergency care center if you experience symptoms, or forget to remove a tampon, Moritz said.

Massabni also struggled to get "Maddy's Law" passed in his area, which would mandate students in fifth grade, and higher classes, to have an information session on TSS. He asks anyone with TSS experience to contact dontshockme.org or via email at dontshockme19@aol.com.

"I know Maddy will be very grateful for the lives saved," said Massabni. "If he gets through this, he will definitely do what I do."

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