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ANNETTE OF MIDDLESEX Annette was a healthy 17 year old at boarding school in Surrey. One Friday, in June 1989, just seven weeks before her 18th birthday, she felt a bit under the weather. She had just started her period and was using high absorbency tampons. By Sunday, she was in the school sick bay, and her worried parents were driving to visit her. Annette had a high temperature, severe headache and "appeared distant". However, it wasn't until the Wednesday that she was rushed to hospital, with what doctors thought was a burst appendix. In the early hours of the Thursday, she was put onto a ventilator, and her parents had what was to be their last conversation with Annette. The doctors advised her parents that she was suffering from toxic shock syndrome, a disease that they had never heard of. During the night Annette's condition suddenly deteriorated and she suffered two massive heart attacks and died. Posted 30/12/2000

USA PRESS AGENCY FILES REVEAL MORE CASES OF TOXIC SHOCK SYNDROME - (1ST JANUARY 2009) (USA readers are invited to add more detail if they know about these TSS cases). KELLY NEFF, a 16 year old student at Lincoln-Way East High School in Illinois had been using a new sports-type brand of tampon for the first time shortly before she died of Toxic Shock Syndrome in August 2007. Kelly's uncle Carl was spokesmen for the grieving Neff family and said that Kelly had been experiencing flu-like symptoms since Saturday. She started her period on the previous Wednesday and her mom became concerned on Monday and tried to make a doctor's appointment, but the doctor had no free space. Kelly's parents took her to Loyola University Medical Centre in Maywood, but she died suddenly. DANIELLE GRAVES, an 18 year old college student from Iowa, thought that the hamburger she had eaten had given her stomach ache, so she went to bed early. She woke up that evening with vomiting, diarrhoea and a fever, took some medication and went back to bed. This was a Saturday in December 2005. When she woke up the following afternoon she was worse and her temperature had soared to 104 degrees. She was taken to the local hospital where staff noticed her tampon and found very low blood pressure and a red rash. By late afternoon, Danielle was on a helicopter to Mercy Medical Centre in Des Moines. On Monday she was pale and unconscious, hooked to a ventilator with several IVs attached. Her lungs and kidneys failed and she was revived from 3 cardiac arrests before succumbing to the fourth. She died on the Tuesday afternoon from staphylococcal toxic shock syndrome. KOURTNEY MATTHEWS from San Jose, California, was 16 when she died of tampon-related Toxic Shock Syndrome in November 2004. It started with flu-like symptoms and within 24 hours Kourtney was dead. Her mother Tracy said "Since nobody's been talking about TSS for years, you think tampons are safe. I'm never going to see her get married and have kids. It's really hard when you think that all she was doing was taking care of her personal hygiene". JAMIE ZIMMERMAN, a high school student almost died of TSS when she was 17 years old in April 2002. One Saturday night she went to a party with friends. She was on her period, so she wasn't feeling great to begin with. Things got worse when she started to suffer from a headache, nausea, chills and an upset stomach. By 9 pm she asked her friends to take her home where she was violently sick. Her mother gave her some medication and she went to bed. Two days later she was in a coma and had to be rushed to hospital. LISA MENGARELLI from Illinois, was 18 in 1997, when she nearly died from a mystery disease, later diagnosed as an extreme case of Toxic Shock Syndrome. Then 8 years on, in October 2005, Lisa was diagnosed with osteoporosis. "I wasn't shocked at all", said Lisa, "the medication that I have to take puts me at higher risk of brittle bones. I'm at the point where another chronic condition is not unexpected". Lisa also suffers from Raynaud's phenomenon, which is a circulatory disorder and Lupas, which is a chronic inflammatory disease characterised by fatigue and skin rashes. Lisa said that although she is only 26, she feels like she has the body of an 80 year old. It is not reported if Lisa's condition is due to her suffering from Toxic Shock Syndrome. DOLORES SHEA, aged 30, died of Toxic Shock Syndrome in October 1989 after suffering flu-like symptoms. Four years on, in July 1993, a Chicago newspaper reported that a Santa Anna, (California) jury failed to find the tampon manufacturer (Kimberly-Clark Corp) responsible for her death, but the judge overturned their verdict. This ruling means a retrial in the wrongful death lawsuit brought by Dolores's husband Michael. DONNA MARIE DAVIS, age 31 from Illinois, died of TSS in 1979. Her family finally got permission to sue the tampon manufacturer (Johnson and Johnson) which took place in January 1990. After an 11 hour deliberation, the jury ordered the company to pay $905,000 in compensation. MEGHAN DURAN, a 14 year old student, about to start at Mira Costa High School in Manhattan Beach, California, suffered from Toxic Shock Syndrome in September 2004. She had flu-like symptoms and a rash, and two days later became critically ill. Although she has now recovered, it was reported that she still gets tired very easily. She said that she had never heard of TSS. Her mother said "with something this serious and this dangerous, there should be a more prominent warning on the outside of the box". TRICIA ZAILO, a university student in Michigan, died of Toxic Shock Syndrome in December 2000. She was using a tampon and suffered from a fever over 102 degrees, vomiting, diarrhoea and sunburn-like rashes. LESLEY HUDSON, age 33 from USA, survived Toxic Shock Syndrome in May 1996. "It came on suddenly" she said, "fever, diarrhoea and swollen red hands. I couldn't even get out of bed. On the third day, I was opening a new pack of tampons and decided to look at the warning leaflet. My symptoms matched those on the leaflet. I called my doctor who advised me to get to the Emergency Room right away. I was hospitalised for 4 days, before being fit enough to come home. It took a long time to completely recover though". AMY PAVELL, a teenager from Naperville, Illinois, nearly died from Toxic Shock Syndrome in July 2003. One morning she wasn't feeling too well, but put it down to being on her menstrual cycle. By late afternoon she was exhausted and couldn't hold down sips of water. By evening, her family rushed her to Edward Hospital with a temperature of 104 degrees. The doctors identified very low blood pressure and recognised that Amy had TSS and treatment began. She was kept in for a week before being allowed home. BETTY O'GILVIE from Kansas, died a horrible, bizarre death in 1983. A raging infection caused by a tampon made by International Playtex, resulted in Toxic Shock Syndrome. In December 1996 her family sued the company and the jury awarded them $1.5 million in compensation and $10 million in punitive damages. After lawyers' fees and expenses were deducted, the O'Gilvie family received $4.96 M of those punitive damages and the Internal Revenue Service is also going to get a big portion of it. In LOS ANGELES COUNTY in March 2005, it was reported that five cases of Toxic Shock Syndrome had been discovered in teenage girls from the previous September. All of the teenagers at UCLA and Miller Children's hospital were critically ill, but survived. However, a 16 year old girl in Santa Clara County died in November 2004 from probable TSS, according to the county's medical examiner. The CALIFORNIA DEPARTMENT OF HEALTH said that in the state, eight people had died from Toxic Shock Syndrome in 2002 and that there were four deaths in each of the previous three years. The JOURNAL OF CLINICAL MICROBIOLOGY in June 2004 found that cases of TSS in one region of Minnesota had more than tripled from 2000 to 2003. Posted 6/1/2009

International Tampon Alert Day 8th June 2021 International Tampon Alert Day is a time to reflect on the dangers of tampons containing rayon, particularly to Toxic Shock Syndrome. TSS can be fatal or can cause serious ill health problems and sometimes lengthy recovery. Because of the coronavirus emergency this year, Alice Kilvert Tampon Alert group wishes to inform you that there will be no tampon awareness activities this year. We would also like to draw your attention to the signs and symptoms of TSS: headache, sometimes sore throat, aching muscles, high temperature, shivers/chills, vomiting, watery diarrhoea, dizziness and confusion, red sunburn-like rash usually on chest, abdomen or thighs, and very low blood pressure. It is important to note that not all symptoms may occur, they do not necessarily occur in any fixed order, and they may not persist. If you experience any of these symptoms whilst using a tampon, seek immediate medical attention. Take Care, Stay Safe and Best Wishes, Alice Kilvert Tampon Alert.

DELYSE OF BUCKINGHAMSHIRE Delyse was a 32 year old secretary. Early in August 1993, Delyse started her period and used tampons as usual. However, this time it was to have tragic consequences. On the Saturday morning, Delyse suddenly started vomiting, had severe diarrhoea and a high temperature. She thought that she was suffering from food poisoning. Later that day her partner called the doctor, who diagnosed flu. On the Monday, Delyse went back to her GP who diagnosed gastritis - inflammation of the lining of the stomach. Her condition worsened and on Tuesday she was admitted to the local hospital with a suspected burst appendix. Delyse seemed to be in a stable condition whilst the diagnosis began, but within 24 hours, she was rushed into Intensive Care, then onto a ventilator as her lungs had collapsed. She was then transferred to a specialist hospital nearby, where her condition improved slightly. When her vital organs, including liver and kidneys, failed, Delyse was put onto a dialysis machine. After 5 weeks of fighting for her life, Delyse suffered a massive brain haemorrhage and died on 9th September. Posted 30/12/2000

KAREN OF HAMPSHIRE One Thursday in January 1991, 20 year old Karen became ill with sickness and diarrhoea. Although she was not aware of the connection, she was having a period and using tampons. She called the doctor who initially diagnosed gastro-enteritis and gave her some medicine. Karen continued vomiting, suffered severe diarrhoea and was in agony, and on Sunday the doctor suspected appendicitis and she was rushed to hospital. As she was severely dehydrated, Karen was immediately put on a drip, whilst the diagnosis was being made. The next morning (Monday), Karen felt fine and was laughing and joking with her parents. However, her mother noticed that her breathing was laboured and that she had a red rash on her leg. But by 3 pm, Karen's condition worsened and she was given oxygen. By 9 pm she had lapsed into unconsciousness and transferred to Intensive Care. The medical staff did not know what was causing the problem, although toxic shock was considered. She had 15 tubes going into and out of her. At 10 pm Karen suffered a cardiac arrest, and the IC staff resuscitated her, but her condition was critical. At 1 am on the Tuesday morning, Karen had a last injection to stimulate her blood flow, and her parents were told that this was her last hope. Tragically, Karen died at 2.15 am. Posted 30/12/2000

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Alice's Story Alice Kilvert, aged 15, died on Tuesday, 26th November 1991 of tampon-related Toxic Shock Syndrome at Trafford General Hospital, Manchester. Alice's symptoms were initially very mild and did not cause any undue concern. On the Sunday prior to her dEAth she complained of a headache which persisted, but eased with aspirin. During Sunday evening she was able to watch television, but she was sick͞ during the night. Although very pale on Monday morning, she went to school in order to start her mock GCSE exams, but was taken home as she appeared to be developing influenza.. Alice went sraight to bed and by tea time she had a slight temperature. At 7pm she was alert enough to talk about the early evening TV she had missed, but by 10pm she seemed vague and confused and a little faint. The next morning Alice's breathing was shallow and she had a higher temperature, so the emergency doctor was called. The doctor phoned for an ambulance for Alice to be taken to hospıtal, but when the ambulance staff tested for bľood pressure, it was so low it hardly registered. She arrived at hospıtal at 9am and her condition was diagn0sed as either TOXIC SHOCK SYNDROME or meningitis, and treatment began. She was taken into Intensive Care and put onto a ventilator as her breathing was giving cause for concern. However, the strain on her heart brought on two cardiac arrests. She did not recover from the second one and died at 1pm. http://www.tamponalert.org.uk/akta/alicesst.htm

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In memory of Alice 26th September 1997, 1:00am One day 15-year-old Alice Kilvert was revising for her mock GCSEs. The next she was đeađ. Toxic Shock Syndrome was to blame. Now her teacher mother has sworn that no other schoolgirl should meet the same fate. Reva Klein reports. It was the night before her moc͞k GCSEs at Urmston Grammar School in Manchester that 15-year-old Alice Kilvert complained of aches. Her parents Jenny and Peter weren’t unduly concerned and saw her off to school the next day. Thirty-six hours later, while her schoolmates were fighting the butterflies in their stomachs before their next exam, Alice was fıghtıng for her life in intensive care. She lost the figEht. Doctors unequivocally cited Toxic Shock Syndrome (TSS) as the cause of dEath. Alice had been menstruating and using tampons when she became ıll. Six years on, Alice’s geology teacher mother is an expert on Toxic Shock Syndrome. Since they lost their daughter, she and Peter have been collecting information about TSS from medical experts and survivors of the disease, adapting it into digestible form for school nurses and teachers, and disseminating it from their home. She has made a video, taken on the manufacturers of tampons to make their information to users more readable and works tirelessly for a Tampon Safety Bill to be introduced in Parliament. Jenny set up the Alice Kilvert Tampon Alert as an information service and campaign “almost immediately after Alice’s dEath. We wanted to use her story to warn̵ other people.” But there are no “shock horror” warnings. “We’ve been very careful about how we present information,” says Jenny. “We don’t want to lose a dialogue with people who want to use tampons. So we’re not saying ‘don’t use tampons because my daughter died’, because people wouldn’t listen and nobody likes being told what to do. Instead, we tell the facts and how to minimise the risks, and then let them make up their own minds.” The risks are small - and figures are difficult to establish since TSS is not a notifiable disease. But according to the Public Health Laboratory Service there are around 40 cases in the UK each year. Only 18 are “confirmed” or “probable”, and, of these, two or three are fatal. Sixty per cent of TSS sufferers are under 25. Dr Sarah Brewer of the Toxic Shock Syndrome Information Service - funded by tampon manufacturers - says only half the total cases are associated with tampon use. The others, affecting men, children and non-menstruating women, are the result of burns, boils, insect bites or surgerıes. The dısease is caused by toxin-producing strains of the staphylococcus aureus bacterium, harboured in the bodies of between 4 and 10 per cent of people. A 1986 paper in the US Journal of Adolescent Health Care by Dr Lawrence D’Angelo offers insights into the possible dangers. “Teens who use tampons have a risk of TSS that is greater than women who are older and use the same feminine hygiene products,” he says. Research cited in the Toxic Shock Syndrome Information Service literature says that between 5 and 15 per cent of 10 to 19-year-old girls have low levels of antibodies to the toxins produced by the staph bacterla. Jenny Kilvert is clear about what the data means in real terms. “For a lot of young women, tampons will be safe to use. But for some girls, using one for a couple of hours will set off the toxıc reaction because they don’t have immunity.” The Kilverts and their campaign partners, the Women’s Environmental Network, are concerned at the targeting of young women by tampon manufacturers, with adverts showing tampons as the great liberator of young womankind - day and night. “The evidence shows that the higher the absorbency of tampons, the higher the risk,” says Jenny. The Toxic Shock Syndrome Information Service recommends that women use the lowest absorbency tampons suitable to their needs. It says that the rısk of tampon-related TSS rises with greater tampon absorbency. “But in the UK, absorbencies aren’t standardised,” says Jenny Kilvert. “Our campaign believes that, to minimise risk, you should change a tampon every four to six hours - including the middle of the night - and use the lowest absorbency possible.” Evidence from Dr Jeffrey Parsonet of the Dartmouth-Hitchcock Medical Centre in Lebanon, New Hampshire, also indicates that continuous tampon use over 24 hours increases the rısk In other words, if you use a tampon at night, you should use a sanitary towel for part of the previous and following day. Jenny Kilvert took early retirement last year and now works as a part-time supply teacher. Yet she is busier than ever. She gets up to a dozen requests a week for leaflets from health promotion units working in primary and secondary schools as well as from individuals. And then there is the campaigning work. Last week she met Tessa Jowell, Minister of Public Health, who will now speak to tampon manufacturers about the use of all-night tampons. Her department will also be liaising with the Royal College of Obstetricians and Gynaecologists to confirm the medical profession’s view on all-night tampon use. The campaign is an important part of Jenny’s life. “This has certainly been therapeutic for us,” she admits. “It allows us to talk about Alice, to keep her spirit alive. Through the campaign I’ve gone to places and met people I would have never met before. “Every year, we have a party on Alice’s birthday with TSS surviv0rs and the families of those who haven’t survived. But I try to make sure the campaign doesn’t take over every single minute.” For details of resources, contact Jenny Kilvert, Alice Kilvert Tampon Alert, 16 Blinco Road, Urmston, Manchester M41 9NF

BRITAIN'S YOUNGEST VICTIM OF TAMPON-RELATED TOXIC SHOCK SYNDROME On Monday 13th August 2001 the Inquest into the death of 13-year-old Kayleigh Ann Jones of Middlesbrough, revealed that she died of tampon-related Toxic Shock Syndrome, the very first time that she had used tampons throughout her period. The Coroner, Michael Sheffield, was so affected by this tragic loss of a very bright young teenager that he decided to use his special powers to write to the Department of Health to enlist its support to highlight the dangers of tampons, to the medical profession and in schools. Kayleigh died in September 1999. Thursday was the first day back to school and it was the last day of her period. But Kayleigh became ill with sickness and diarrhoea shortly after arriving at school, and by the afternoon, the school had to call her stepfather, Terry Martell, to pick her up and take her home. She went straight to bed, and her mother Carol nursed her through the night. The next day there was no change so Carol phoned the GP. The Doctor advised giving plenty of fluids as it was probably a viral infection. But this didn't improve the situation, and as Kayleigh's temperature rose markedly, she began to ramble and became delirious, so the doctor was called again. The doctor could not find a blood pressure and immediately gave Kayleigh penicillin as he thought that she had meningitis He called the ambulance and put her on a drip. Kayleigh was stabilised in hospital and TSS was diagnosed. On Saturday there were more tests and treatment and she had a peaceful night. However, the following day Kayleigh's temperature went up again, her lungs filled with fluid and she suffered a fatal heart attack just four days after the initial symptoms. The Inquest found that the medical staff at the hospital and the GP did all that they could to save Kayleigh, leaving no doubt that Kayleigh died as a result of TSS caused by tampons. A verdict of Misadventure was recorded. The tampons used were Morrison's Supermarket own brand manufactured by Inbrand UK that have now gone out of business. Morrison's are currently supplied by Childwood Ltd. As a result of the Inquest, Kayleigh's mother, Carol Martell, has now been able to tell the world that the life of her loving and talented daughter has been tragically cut short by a tampon. She has received front page news and an in-depth report in the Northern Echo, followed up with news items in the Sun, Mirror Mail, Telegraph and the Express. Kayleigh's father, David Jones, was interviewed on GMTV and appeared in his local Crawley News, and Jenny Kilvert was interviewed on BBC Radio One. The media coverage prompted Discovery Channel to include a programme on Toxic Shock Syndrome in their series "Doctor in the House". The programme included TSS survivor Angela Smith of Norwich, who had TSS in November 1992 when she was 19 years old. Posted 19/8/2001

Finola's Story 16-year-old Finola Tyson of Preston On Tuesday afternoon, 15 June 2005, 16-year-old Finola Tyson of Preston, complained of headache and stomach pains and asked her mother, Ange, to ring work, to say that she would not be attending that evening shift. It was the third day of her period and she had been using tampons. Around 10pm Fin said she was tired and wanted to go to bed. During the night she was sick and the next morning still complained of a headache and stomach ache. Her mother gave her Paracetamol and rang the doctor. He prescribed some Mefanamic Acid (Ponstans 40) for her period pains, (at mother's request), and also prescribed some tablets to stop her being sick. Ange collected the prescription, administered it, gave Finola a jug of water asking her to drink plenty and left her in bed to sleep. A little later, Ange. asked Fin how she felt and she said she had not been sick anymore and that her stomache ache had improved. She just wanted to sleep. The next day, Fin had an exam at school, so she was awoken at 7am. She came down stairs in her pyjamas, looking very lethargic. She had a red rash under her arms and was breathing faster than normal. Ange. asked Fin to breathe in through her nose and out through her mouth. It was at this point that Ange's partner John, noticed Fin's tongue. It was red with white spots, like a strawberry. She asked Fin. if she had a sore throat to which she replied she had. Ange. phoned the NHS Help-line and spoke at length with one of the Advisers who said "take her to her GP and don't worry". The doctor examined Fin., took her temperature, checked her throat, confirmed that she had a red raw throat, and diagnosed viral infection. He said that as she was taking her exams, that would account for her panic breathing. The rash was put down to eczema for which she had only recently been diagnosed. Fin was prescribed Amoxicillin for her throat, gel for her tongue (anti fungal), steroid cream for the rash and more Paracetamol tablets. Ange. monitored her daughter through the day, making sure she drank plenty of water and took all her medication. On Friday, there was still no change, no better, but no worse. Her "strawberry tongue" had gone down slightly and the white spots had subsided. On the Saturday morning, Ange. ran a bath for Fin. She went to her room to say that she would feel better if she had a bath and washed her hair, as she had not had one since Tuesday morning. Fin. agreed, but couldn't get up. She complained that her bones were aching and started to shout at her mother that she couldn't get up. Ange. managed to swing her out of bed and with help and support they got to the bathroom. Putting her into the bath was OK. She left her there for 5 minutes and returned to find she had not moved. Ange. knelt down to wash Fin's hair and then her body. She kept complaining of hurting and being tired. Getting Fin out of the bath was a nightmare, she felt so heavy and kept apologising all the time. Ange. managed to get her dry and back into bed. Ange. suspected meningitis and did the glass test on her rash, it stayed white. After 3 days on penicillin Fin was worse than ever, so Ange. phoned the doctor again. Being Saturday the calls were redirected to the hospital Primary Care Centre. The nurse on duty said get Fin to hospital as soon as possible. Ange's sister volunteered to take them to hospital and they drove straight there. The doctor called her in straight away. He checked her stomach and phoned someone straight away. There was a definite panic in the air as Fin had drips put into her. Ange. was asked to describe Fin's symptoms and history leading up to this day over and over again. They all kept saying what a good mum she had been and that she had done everything she could have. Then the bombshell, they confirmed they thought Fin had Toxic Shock Syndrome. She was taken to the Intensive Care Unit (ICU) around 5.30pm. There was a lot of activity, putting in more lines for drips, etc. The staff where brilliant right from the start, although one nurse was increasingly concerned that Fin was only on Oxygen and needed ventilating as she appeared to be weakening. At 8.30pm whilst a doctor was explaining the severity of the illness, Fin had a cardiac arrest. It felt like an eternity for Ange and John, but then the nurse came to say that they could go and see her. She was alive, but was now on a ventilator. The doctors explained the serious nature of Fin's condition and that they were doing everything possible. They were told that the best thing they could do, would be to go home and get some rest, Fin was going to be in hospital for a long time. They got a taxi back home and after a lot of tears and disbelief that something as horrific as this could happen to a beautiful girl they all tried to get some rest. The telephone rang around 2.30pm. It was the ICU and they said it would be better if Fin's parents came back to the hospital as her blood pressure had dropped dangerously low. Fin spent four weeks in ICU and after seven operations, lost her fight for life on Sunday 18 July 2004, just three weeks after her 16th birthday. Posted 27/6/2006

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