Please read the General Disclaimer before the case studies.
13. CLAUDIA FROM GLOUCESTERSHIRE HAD TSS IN JANUARY 2008
Claudia was in Canada on a ski course, training to be a ski instructor when she got Toxic Shock Syndrome. Her first symptom was itching and she assumed it was a yeast infection, although she hadn’t had one before. That was on the Friday and she had started her period on the Thursday. Over the weekend Claudia felt that it wasn’t too serious and there was less itching, however it was very red and painful. Then on the Monday she began feeling ill and then at about five o’clock she was sick. She kept on being sick and then had diarrhoea whilst being sick. She had no control. Claudia says “it’s all a bit of a blur, but I slowly became unconscious. I can remember certain things like I couldn't keep any drinks down. But the problem is, these symptoms are exactly like flu and that is where the danger is. Everyone thought I had the flu”!! After three days of being in bed Claudia was taken to a clinic. She could not really move herself, as her muscles were non existent.
Luckily, the Doctor at the clinic said “get this girl to hospital now” as they knew what was wrong with her. They had seen that Claudia still had her tampon in place. She was so ill by this time that she was incapable of removing it herself. Claudia went into the hospital on the Wednesday. She’s not sure of the treatment as she was semi conscious. The next day Claudia noticed a blue rash. Also, her legs, feet and hands swelled up and she couldn't move. Then her palms and soles started to peel. However, she did recover quickly and was in hospital for only five days.
Three weeks later and back in England Claudia says “now I’m walking normally again, although I’m definitely more tired. I'm quite a strong person, well I hope I am. I am trying to keep myself motivated, but it is hard and when I found out my hair might come out I was a wee bit upset. You see I'm on my gap year and I’m going to South America in April, so this is why I’m worried about getting TSS again. I won't be using tampons again, that's for sure”.
Posted 29/3/2008
12. TOXIC SHOCK SYNDROME FOLLOWING A NOSE OPERATION
Paula, from South Yorkshire, went to hospital on Wednesday 10th January 2006, for a 2 hour operation on her nose. She had slipped in the shower the previous year and dislocated it. The operation was normal and Paula was back on the ward for 1 pm. The nurse told her husband that she had a local reaction to morphine and was being sick. Also Paula’s blood pressure was a bit low. She didn’t come ‘round from the operation before being really sick. She drifted in and out of sleep all day and didn’t remember seeing her husband who was there most of the day. The specialist came the same day and told her everything went well and that she could go home. Paula kept telling the nurses that she didn’t feel well and at about 6pm her husband noticed a red rash on her skin. The nurses told him it was nothing to worry about, she was just flushed from the operation.
That night Paula started being sick again. The nurse said it was just blood from the operation, but she vomited blood at least 15 times throughout the night. She'd had 4 anti-sickness injections, but they didn't work. On the Thursday, Paula’s husband phoned to see how she was. The nurses told him that she was fine and ready to come home. He was really shocked when he came in and saw Paula. She had not managed to eat anything or go to the toilet on her own. The nurse was telling her to get dressed, but she couldn't even stand up. Her body was even more bright red and very swollen, and she had lost control of her bowels. She had pains in her stomach, a severe sore throat, her blood pressure was still dropping and her temperature was very high. So Paula was kept in hospital and put on IV fluids.
At about 5pm on Thursday, they decided that something was wrong. A Doctor came to see Paula and did loads of blood tests and arranged for a chest x-ray. About 6.30 pm they took her to Intensive Care. Her husband was told that night that she was critical and may not make it. She was in Intensive Care for 6 days and everyday something else seemed to go wrong. Paula’s liver and kidneys were failing and she was given treatment to help pump the blood around her body. Then she had fluid on her lungs, which they drained. Her lungs partially collapsed because she didn't have the energy to inflate them. Then a heart valve became weak giving her an irregular heartbeat. Her blood sugar was low and her platelet levels were very low.
After 6 days in ICU, Paula returned to the ENT ward and began recovering quite well, but she needed physiotherapy to get her walking again. The Doctors in ICU couldn't understand how she could have Toxic Shock Syndrome. They thought she must have left a tampon in. The packs in her nose were only in place for 24 hours, but Paula had become ill immediately after they had been removed. (AKTA says that it’s possible the nasal packs contained rayon, which reacted with Staphylococcus aureus in Paula’s nose to produce toxins).
Once she was home her hands and feet started peeling. She had to take iron tablets as she had become anaemic. She also needed to take ramipril to protect her heart. Paula noticed that she suffered from short-term memory loss and also she lost some hair. She got very tired and it took a long time before she got back to normal. Although this episode was not related to tampon use, she knows that she could be susceptible to TSS and so has decided not to use tampons.
Posted 29/3/2008
11. ALISH, A 17-YEAR-OLD SOUTH AFRICAN, SURVIVES TOXIC SHOCK
Alish’s mother Marinda tells the story of her daughter’s fight for life.
On Sunday, 5 August 2007 we woke up as usual to go to church. I woke Alish, my daughter, to get ready and she was up and very lively as usual. Due to the fact that she came in very late the previous evening, her father gave her permission to lie in a little bit. The rest of the family left for church and on returning at 11:30 we found her still in bed complaining of a headache and a very stiff and aching neck. Shortly after she started to vomit and was developing a fever. Symptoms were typical that of gastritis and I gave her a tablet against the nausea and vomiting. For the rest of the afternoon she was lying down and was very dizzy. By about 9:00 she started to complain about a rash on her thighs and on checking I discovered that it was also on her back, chest and stomach, but was looking a little bit better. However, when she started to complain about pins and needles on her face and hands, I really became concerned and we took her to the emergency unit of a local hospital. The doctor diagnosed her with an “allergic reaction” to the tablets I gave her, gave her an antihistamine injection and prescribed Mucaine. On my question about the pins and needles I got no answer.
The following morning, I had to leave for Bloemfontein at 5:00 and on greeting her, I noticed that her breathing was very shallow and fast. I alerted my husband to please check on her, because I was concerned about the matter. Apparently, not long after I left she started to vomit again and was very weak. My husband took her to a GP, who immediately put her on a drip, she was dehydrated and diagnosed with jaundice. After an hour or two on the drip there was no improvement and she was rushed to the hospital where she saw a specialist who immediately admitted her to the Intensive Care Unit. By this time her blood pressure was very low and they had to put a drip directly into the heart. In the meantime I had to get a flight back from Bloemfontein and rushed to the hospital, where I found my child very ill and hardly able to open her eyes to speak to me.
The specialist informed us that he doesn’t know what is wrong with her, but that she is very ill. Due to the low blood pressure her heart rate and kidneys and all vital organs where monitored very closely and a catheter was inserted. When everybody was leaving she signaled me to stay behind and requested me to please go and get her some tampons, since she is menstruating. The nursing sister told me not to worry, she will assist her in changing the tampon, because my daughter was too weak to help herself. It was however only the following morning when changing the tampon again that they realized something was wrong. A gynecologist was called in, who was able to diagnose her with Toxic Shock Syndrome.
By this time most of the symptoms of TSS were present. Her whole body was swollen, from her face down to her toes. Her fingers and toes were blue due to the low blood pressure and the swelling. Her whole mouth was covered with blisters inside due to the high fever. She had difficulty in opening her eyes, since it was light sensitive and she was very emotional. It was only on the fourth day in the ICU that her blood pressure started to normalize and she was moved to a general ward.
I wasn’t aware of the fact that you can develop Toxic Shock Syndrome by using tampons and since have established that there are a lot of mothers and women who aren’t. I therefore, decided to alert all mothers of teenage daughters and women in general, should you develop the symptoms as mentioned and you are using tampons, to please inform your doctor immediately. I discovered that most doctors will go through their whole career without encountering one such case, since the occurrence is rare, but you do not know when you might be one of the rare cases. The specialist who treated my daughter did not know what was wrong and had never had a case such as this. His perception also was that it was a “forgotten” tampon that caused the illness, which was not the case.
I always thought of myself as quite informed on health issues, but was quite taken by surprise when my daughter was diagnosed with Toxic Shock Syndrome. I had never heard about it before.
Posted 29/3/2008
10. KATIE OF NOTTINGHAMSHIRE.
In the summer of 1990, Katie, then aged 15, went on holiday to Devon with her family. It was a holiday that she'll never forget.
One morning she woke up with a headache and feeling shivery. Her mother thought that it could be flu and suggested that she should stay in bed. During the day her symptoms worsened as her temperature rose; she had aching muscles, a stiff neck and a sore mouth. By tea time she became breathless and she was so weak that she needed assistance to go to the toilet. Her parents sent for the doctor, who diagnosed a virus and prescribed antibiotics. That night Katie's temperature soared to 102 degrees. The next morning she felt awful and had a severe headache. Her mother noticed a red rash on her leg. Katie's eyes were pink and sticky and her skin was turning yellow. The doctor was called again. He took one look at her and called for an ambulance. She was rushed to hospital.
At hospital, the doctors performed a lumber puncture to test for meningitis and took a blood sample to test for glandular fever. Then the doctor discovered that Katie was menstruating and took a vaginal swab for testing. By now, her joints were swollen, her mouth was blistered, her liver and kidneys were failing and her veins and arteries had gone into spasm. She was transferred to Intensive Care.
The next morning a microbiologist had identified that Katie was suffering from Toxic Shock Syndrome, brought on by the tampons she had been using. She was being treated by the right antibiotics, and the doctors said that they would just have to wait and hope. Katie remained conscious for the three days that she was in Intensive Care. The pain was excruciating. She was transferred to a ward and after a week she was strong enough to go home with the aid of a wheelchair.
Katie felt weak for months. Thick layers of skin peeled off her hands and feet. This was as a result of the blood supply being cut off from her extremities during her illness. Then her hair started to fall out in clumps. This lasted for six months, and it has never grown back to its previous thickness. She realised that her memory wasn't as good and her ability to concentrate had diminished.
Katie remembers being told at school that Toxic Shock Syndrome is caused by leaving a tampon in too long. Now she knows differently. Any woman or girl who uses tampons can get TSS. That's why she'll never use tampons again. It might be rare, but you never know who it might strike next.
Posted 30/12/2000
9. JEAN OF SURREY.
Jean was 46 when she suffered from Toxic Shock Syndrome. It was the second day of her period and she was using tampons. She'd had a headache all day that wouldn't go away, so she decided to go to bed early that evening. Jean couldn't sleep and her headache intensified. Suddenly she was vomiting and suffering from diarrhoea. Jean thought that it must be food poisoning. The next day, Jean felt no better, although the sickness and diarrhoea had stopped. When she began to lapse into unconsciousness her daughter telephoned the doctor, who immediately summoned an ambulance. By this time Jean's lips had a bluish tinge and she was having breathing difficulties. She went into a coma on the way to hospital as her blood pressure plummeted.
In Intensive Care, Jean needed a ventilator and dialysis as her kidneys had ceased to function. Doctors noticed that the tips of her fingers and toes were turning black with gangrene. Over the next three weeks Jean was so weak that she only had a 20% chance of survival. Because of the drugs her weight ballooned from 10 stone to 13 stone. Her blonde hair turned grey and her green eyes turned blue. The gangrene spread to her knee, nose and the back of her head. Jean went into stress and was given a tracheotomy to help her to breathe. Her veins were collapsing and it was almost impossible to insert the necessary drips.
At this point the doctor asked Jean's husband if he could try an experimental drug which he hoped would increase her extremely low blood pressure. Within minutes Jean started to respond and her blood pressure began to increase. She was going to make it, although she was still critically ill. Two days later she opened her eyes and asked where she was. She noticed her black toes. Jean spent six months in hospital and eventually had her toes amputated. Her feet were very painful and she had to get used to walking again. Now she wears special shoes and occasionally uses a walking stick. Jean finds it difficult to concentrate and has problems with her short-term memory.
Jean says that it's a miracle that she's alive today. She has enormous admiration for the doctors, nurses and of course her family who were with her all the time. Jean says that she will never use a tampon again. She has told all her friends and neighbours not to believe those trendy tampon adverts on the TV. "Tampons nearly killed me and they will kill others," she says.
Posted 30/12/2000
8. JUDY OF OXFORDSHIRE.
Judy, a 27 year old mother, had been using tampons since she was 12. Her episode of Toxic Shock Syndrome began 10 weeks after the birth of her second daughter. She woke up on the third day of her period feeling tired and her head was spinning, but she had to look after her new baby and her 2 year old daughter. By evening she was exhausted and went to bed really early and just slept. The next morning, Judy got up and felt fine. But an hour after her husband had gone to work she had no strength to do anything. She vomited twice and had severe diarrhoea. She phoned her mother to look after the girls and went back to bed. She felt worse and worse before eventually getting off to sleep.
The next morning was the same. Judy was fine until after her husband had left for work. A sudden attack of diarrhoea hit her before she could reach the toilet. Once again she asked her mother to look after the children, and her mother also called the doctor. Judy was taken to hospital by her sister-in-law and nearly fainted. Her legs were so painful and weak that she needed a wheelchair. Her skin was yellow. Judy was admitted to the infectious diseases ward for tests and the diarrhoea was still running out of her. Within the hour they had put two drips into her. The doctors had found her tampon by now and had taken it away for testing. She had a rash on her lower legs and feet.
By the next morning, and numerous doctors later, they had diagnosed Toxic Shock Syndrome. Judy was put on even more drips and had heart and kidney checks. Her fingers and toes tingled all the time, like a burning sensation. The skin on her fingers and toes later peeled off and it was terrifying and very painful. A week in hospital and she was fit enough to go home.
Judy had to take tablets and return to hospital for heart and kidney checks and blood tests. She seemed to recover quite well, but lost her sense of taste for about 5 weeks. She was under health surveillance for 6 months and received the all clear. Then Judy's hair started falling out. It didn't leave her bald, but it was very thin in places. This lasted about two months before getting back to normal.
Judy says that not enough people know about the dangers of tampons and Toxic Shock Syndrome. She will never use tampons again, and there's no way she'd let her daughters use them either.Posted 30/12/2000
7. 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
6. 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
5. 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
4. SHARON OF COUNTY DURHAM.
Sharon, a keen sportswoman, died of Toxic Shock Syndrome two months after giving birth to her second child. Her husband Anthony recalls the joy and the tragedy of eight weeks in late 1991. Twenty six year old Sharon used tampons for her first period after the birth of Rebecca. It started one Sunday when she began to feel very tired. The next day Sharon was suffering with diarrhoea, vomiting and a prickly red rash. The doctor was called and diagnosed a virus. But by Thursday her condition had deteriorated. Now, Sharon's fingernails and lips were turning blue, the rash was like sunburn and she was having breathing difficulties.
Sharon was rushed to hospital. Her condition improved slightly, but then her kidneys collapsed and she was transferred to Intensive Care. Doctors diagnosed toxic shock syndrome, caused by the tampon that she had been using. The deadly toxins were causing all sorts of problems as they poisoned every part of her body. Her lungs were beginning to fail and she was transferred to the Regional specialist hospital where a lung transplant was considered. However, Sharon was too ill to undertake this operation. Doctors fought so hard to save her life, but after eight weeks of intensive care, Sharon suffered a cardiac arrest and diedPosted 30/12/2000
3. SHANE OF BRISTOL.
Thirty three year old mother of two, Shane, died of tampon-related Toxic Shock Syndrome in March 1994. On Friday 4th March, Shane said that she felt unwell. During the early hours of Saturday morning she began vomiting and felt awful. She asked her mother to look after the children. By Sunday she was suffering severe diarrhoea, she had a red rash and was now semi conscious. She had a high temperature, her breathing was laboured, and she had pus coming from her eyes. At 9 am her husband phoned the doctor who suggested that it was a stomach bug. Shane's husband insisted that the doctor must visit, but on arrival, the doctor confirmed a stomach bug, and suggested paracetamol to lower her temperature.
By Monday, Shane's condition had not improved and her mother called the doctor again. The doctor took one look at Shane and called an ambulance. She arrived at hospital at 3 pm and went straight into Intensive Care. But after six cardiac arrests, Shane died at 5.30 pm.Posted 30/12/2000
2. PAMELA OF EDINBURGH.
One Sunday in March 1993, Pamela aged 34, took to her bed with a severe sore throat. At the time she knew that a lot of people round about had flu, so she thought that she must be getting it too. On Monday morning she felt really faint. Her husband went off to work, but asked Pamela's mother to phone the doctor. The doctor diagnosed a sore throat and prescribed penicillin. Although Pamela was able to talk coherently to the doctor, she can't remember the rest of the day, not even talking strangely to her husband when he arrived home from work. She felt so tired. The doctor was telephoned again and he suggested looking to see if Pamela had spots on her feet! She did have. The doctor called 'round again and got her admitted to hospital with suspected meningitis.
Luck was with Pamela that evening because the Specialist on duty had seen Toxic Shock Syndrome before. The tampon that had been removed when Pamela was admitted to hospital was tested positively for Staphylococcus aureus and TSS was diagnosed. Ten days of hospital treatment saved Pamela's life, but she was so weak that she had to leave the hospital in a wheelchair and learn how to walk again.
It took months to recover physically and even longer to recover mentally. She lost a lot of her hair, her skin started peeling off and she ached all over. She had been using tampons since she was 17, but never again.Posted 30/12/2000
1. FIONA OF ROSS-SHIRE.
On New years Eve 1990, 22 year old Fiona, woke up with crippling period pain. Her mother phoned work to let them know that Fiona would not be in today. As the day wore on Fiona became worse and started vomiting. At tea time the doctor was called and flu was diagnosed. But over the next few hours, Fiona's condition deteriorated. She started with diarrhoea, her temperature soared and she developed a rash all over her neck. A worried mother called the doctor again at 2 am, and again flu was diagnosed. But next morning Fiona was unconscious and the ambulance was called.
On arrival at hospital, meningitis was first suspected, (but it wasn't until 3 months later that tampon-related toxic shock syndrome was confirmed). Fiona's temperature had rocketed and she was surrounded by bags of ice. The intensive care staff worked through the day, but at 3 am the next morning, Fiona suffered a cardiac arrest. The team managed to save Fiona, but the shattering news was that Fiona may be brain damaged, blind and paralysed in all four limbs. In the next two weeks Fiona fought for her life. Her kidneys failed and she needed dialysis, and her toes turned black with gangrene and would have to be amputated.
Three months later, Fiona started to come out of her coma. She couldn't speak, but she could hear and smile. Fiona stayed in hospital over the next year and was on drips and dialysis, and having physiotherapy and speech therapy. She was transferred to a Nursing home to be close to her parents. As a result of using a tampon, Fiona is totally blind, confined to a wheelchair, unable to use her arms and only has limited speech.