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Post Cervarix Syndrome: Eleanor – Kettering, Northamptonshire, UK

December 21, 2011 By 4 Comments

Story as told by Lisa, Eleanor’s mum

Post Cervarix Syndrome Victim: Eleanor from the UK

Post Cervarix Syndrome?

Eleanor was born a very healthy baby who never really had any major illnesses. When she was 7 months old, she had penicillin for the first time and had an extreme reaction in which she turned blue and stopped breathing.  She has never had penicillin since.   From then on she was always well – a healthy happy young child.  She was an extrovert who had many friends, did gymnastics and won a couple of silver medals in competitions.    She attended cubs and then went on to scouts where she went camping and enjoyed many outdoor activities.  She joinedSt John’scadets and swam forKetteringswimming club.  Her sisters were always jealous of how Eleanor could strike up a conversation and make friends wherever she went due to her bubbly personality.  She would be out most weekends at sleep-overs, going to endless birthday parties or joining in activities with the scouts or St Johns cadets.

Eleanor had her first hospital stay in October 2008, a few days after her first HPV jab.  She had constant pain in her stomach since the injection. When I saw the GP he thought it might be her appendix.  She was in the hospital for a few days for tests but they couldn’t find anything wrong with her.  They said, “She must be a little constipated. It couldn’t be the injection – just a coincidence.”

She came home from hospital and had her second jab in the November.  Over the next few months, she visited the GP on a number of occasions due to still being in pain with her stomach.  They tried tablets for IBS which didn’t work; different tablets for her periods which never completely eased the pain but regulated her cycle.   During this time she went for a check up with her dentist who found that her teeth had started to corrode due to acid reflux.  She had to sleep propped up and take antacids to help with this problem.

After the May 2009 injection she complained how painful the jab had been. We continued to see the GP regarding Ellie having pain when she ate and stomach swelling/bloating after food, making her feel very uncomfortable.

Over this year Ellie was not able to take part in as many activities. She was now only going to scouts as she just felt too tired to do anything else.  She didn’t go out as much but was still managing to attend school, although it was tiring.

In May of 2009, Eleanor had a blood test which showed something wrong with her blood count and I was asked to take her back into the doctors.  The GP who saw her dismissed it saying it just proves she has IBS.  She then saw a different doctor who I requested to take Eleanor on as his patient. Unlike others she had seen, he always believed her, made her feel that her illness wasn’t in her head, and referred her to a consultant at the hospital when needed.

In September 2009, before she got to see the consultant Eleanor fell ill and was unable to keep any food or water down. She went to Key doc (after hours medical service) a couple of times that week due to the pain.  On the second visit to the hospital, she was seen by a nurse practitioner who did not appear to be happy that Eleanor was back.  When the nurse examined her stomach and liver, she was concerned and called for the doctor who admitted her to hospital.   Whilst in the room, the nurse phoned the ward and told them the doctor wanted Ellie to be admitted, but she personally didn’t think she should be as her vital signs where good.  Since I insisted, she was finding out if there was a bed available.

Eleanor stayed in hospital for a week and was put on a drip to alleviate dehydration and give her stomach a rest.  Whilst in hospital she had an ultra sound which showed a cyst on her liver and a blood test that identified something wrong with her pancreas.  The doctors were unsure, but suspected Eleanor had an ulcer. She was referred to another hospital in Leicester to see Mr Green, a specialist.   She was put on a high dose of ranitidine and omeprazole and had to drink lots of milk and eat ice cream.    She had to give a faeces sample to be analysed to see if she had the bacteria in her stomach which causes ulcers.

She saw Mr Green the following week. He said that Kettering had lost the sample so he couldn’t say if she had an ulcer or not. He thought we should wait and see how things developed over the next 6 weeks. If Eleanor was not better, then they would investigate further.

Eleanor got a lot worse over the next couple of weeks and was re-admitted into hospital by her GP as she was still continually being sick and had to carry a sick bowl where ever she went.   She was told to start the ulcer medication even although they had not proved this was the cause of Eleanor’s problems. Since she was not able to take penicillin she couldn’t take anything until the next day when they worked out which tablets she could have – the treatment consisted of 3 different types of antibiotics.  When she took the first dose she doubled over in pain screaming, was rushed to A and E and re-admitted onto the children’s ward.  This was in October of 2009.  They tried different methods of giving her medication, but every time the pain increased. But it was their theory that she had to complete the course.

The hospital staff put her back onto a drip and started giving her ranitidine intravenously, trying different medications to relieve the sickness.   None of them worked and she remained in hospital for 5 weeks continually being sick every time she ate or drank.  One of the doctors asked her if she was making herself sick – was she worried about getting fat?

She didn’t want me to leave her side as she felt the doctors didn’t believe her. One of the nurses took the sick bowl off her and told her it was in her mind and she was to swallow her vomit!  Thankfully not all the doctors or nurses were like that. Some were very good with Eleanor, although when she complained about the pain they were reluctant to give her medication and always asked her if she was really sure she needed it.

After 5 weeks, she started throwing up fresh blood and granules. She saw Mr Chilton on the ward who is an adult gastroenterologist.  He said that it was possible that the HPV jab could have caused her problems but he wanted to rule out other potential sources. He said she needed to stop taking all medication. Then, he would take biopsies from her stomach and bowel to rule out Crohn’s disease.

She had another couple of tests in Kettering, including an ultra sound showing the cyst on her liver was gone.  She had an appointment the following week as an outpatient at Leicester, Mr Green’s clinic. I was advised by the doctors on the ward to continue and see him. She was discharged so that she could attend.  As she was throwing up blood all the way there Mr Green had her admitted.  She was in hospital for over a week having an endoscopy and a pH level test done.  They found her stomach was inflamed, but attributed it to her vomiting. Her ph was also high but again they said it was a consequence of her being sick.  She was discharged and sent back toKetteringcare.  Mr Chilton, after learning that Mr Green was involved with her care, discharged her as she was still a minor and therefore should stay with Mr Green.

By this time, Eleanor had only been able to attend regular school 10.9% of the time. She was receiving no education from the hospital teacher when she in the hospital.  I constantly asked for Hospital and Outreach but the school never sorted it out.  She became distant from her friends and very isolated. She felt frustrated and depressed as she thought no one believed her.

She was re-admitted to hospital in January 2010 for pain and sickness through A and E. The doctors in hospital decided to refer her to Mr Woods, a gynaecologist, who suspected endometriosis.   She had a laparoscopy in May 2010 which showed everything to be normal.  At this point, because they had not found anything, Eleanor became more withdrawn and very down as she felt no one believed her.  She saw Dr Achayria in June. He decided the only other thing Eleanor could have was abdominal migraines and cyclonic vomiting. He put her on medication to stop the symptoms, saying she would grow out of it.

Eleanor’s pain continued and she still struggled to attend school. She was absent more than she was there but would still study when she felt up to it at home.  By the November, Eleanor’s pain was getting worse and she was having bouts of diarrhoea and sickness. Her stomach was continually swelling up and giving her really bad stretch marks.  This really got her down and she was referred to a specialist registrar in Child and Adolescent mental health as the doctors at the hospital felt a lot of the pain she was having was in her head.

Dr Singh felt that there were no mental issues with Eleanor and referred her back to the hospital for more investigations.  Her consultant, Dr Achayria, then referred her back to the adult gastroenterologist, Dr Azam who she saw in December of 2010.

In February she was sent home from school due to what they thought was a panic attack.  Eleanor nearly passed out due to the pain she was in.  She went to the GP who said it was a mechanism that the body shuts down when the pain get so bad. When she felt this coming on she was to sit down. He increased her painkillers.  The following day Eleanor was not feeling good and I phoned key doc after dropping my other daughter off at work.

When I got home I found Eleanor passed out on the bathroom floor.  When she recovered she started passing fresh blood from her bowel.  I took her straight up to key doc and was seen by a nurse who did not know what to do but as Eleanor’s blood pressure was low suggested that I take her to A & E.  She sat for 3 hours in the waiting room in severe pain before being seen by a doctor.  This doctor was just wonderful with Eleanor. He got her admitted straight away and gave her morphine for the pain.  She stayed in for the weekend on a drip and painkillers.

Again we had a problem with one nurse who refused to give her painkillers as she did not consider Eleanor was in much pain because she was not crying!  I had to ask the doctors for painkillers so the nurse had to give them to her. The following day she was given a colonoscopy and was diagnosed with Ulcerative Colitis.  The nurse who previously had been reluctant to give her medication became very helpful. Her attitude changed towards Eleanor.

Eleanor has been undergoing counselling to help her come to terms with this long term chronic disease.  She has changed dramatically from the bubbly, happy, extrovert to a shell of her former self.  She struggles to attend school and only is in contact with two other people outside of school.   Her social circle has been reduced dramatically. She feels some people appear to pity her making her even more self conscious.  Eleanor spends most of her time on her own. She hates going out and meeting people unless she feels she is in a safe environment. She will go occasionally with her sisters, who will drive her to different places, but they know when Eleanor is tired and they can cater to her needs without making her feel she is ‘different.’

This all happened to my once healthy girl after being given Cervarix, the HPV vaccine.

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Post Cervarix Syndrome Victim: Brianna, Newport Pagnell, Buckinghamshire UK

December 15, 2011 By 9 Comments

Story as told by Brianna’s mum, Laura.

Post Cervarix Syndrome: Brianna from the UK

Post Cervarix Victim

Brianna is just 13 years old. A girl who was in the top sets at school, represented the school in athletics and has been a dancer since she was the age of 2, performing at London’s famous Sadler’s Wells Theatre and the Royal Albert Hall. In more recent years, she developed a love of drama and wants to be an actress when she is older. She is a popular girl, whom people always describe, as being very mature, fun loving and kind.

This was her life until Wednesday, October 19th 2011, exactly 3 weeks after having her first Cervarix vaccine jab at school on Wednesday 28 September. That day, she came home from school complaining of feeling very unwell, nausea being the main symptom.  I kept her off school the next day, but on Friday being as it was the last day of term I sent her back. Later in the day, I received a phone call from the Matron saying she had a temperature and was feeling unwell, so could I collect her.

Initially I thought it was maybe connected to her period as she had this the same day. However, by the following Monday she was still feeling the same, nauseous, hot and cold and now also very faint. I called and spoke to our GP, who also thought the symptoms were connected to her period and prescribed some tablets to help with pain and nausea (she did not have any pain).

By now, it was half term week. Every day I attempted to go out with Brianna and her younger brother, but each time we were never out for long before she was begging to go home, as she felt so unwell. The tablets had no affect at all. Once home, she would lie on the sofa and just sleep.

I called the doctor again the following Monday, 31st October 2011. This time she told us to come in to see her. She requested a urine test and gave Brianna a thorough examination (she had a high temperature again) and prescribed Stemetil to help with the nausea – this does really help.  All this time, Brianna had continued to feel nauseous, was experiencing hot and cold flushes, and feeling faint, dizzy, lethargic and generally unwell. It did not appear to be improving.  We went back to the GP on Thursday when it was confirmed the urine tests were clear. The next step was a blood test, which would also include a check on glandular fever. This was done the next day.   Brianna had to be absent from school all of that week.

She went back in to school on the following Monday and Tuesday, but came home quite pale and tired. She cried because the other children laughed at her when her face went red as a result of a hot flush.  We returned to the GP on Wednesday for the blood test results which were all clear. By now, Brianna had also started to complain about aching arms and legs and a sore throat coming and going. The GP requested yet another blood test to check her thyroid. This has just been done and we are waiting for the result.   She remained off school the rest of the week.

Then only just the other day, it was suggested to me that it could possibly be the HPV vaccine which was causing all these health issues. Something neither of us or the doctor had even considered.  Once I started researching, I realised it could very well be the diagnosis as there were just too many similar health reactions being experienced by other girls who had become ill after HPV vaccinations.

Recently, my GP has spoke to GlaxoSmithKline, the vaccine manufacturer. They confirmed that with the exception of the flushes, all her symptoms are known side effects.  My GP is now putting in an urgent referral to the Paediatrics at the hospital and will call me soon with the latest blood test results.

Brianna did return to school on Monday. She also went in on Tuesday but was feeling very weak and had a very painful sore throat. By midday the Matron called for me to go and collect her.  She is still off school.

She should have received her second injection of Cervarix on the 16th of November 2011, but both her doctor and I agreed that it was not a good idea!  Some days are better than others, but we have found the nausea is constant unless she takes her Stemetil.  One other interesting thing is that Brianna has had regular annual eye tests and always had perfect vision. However, at her last test (3weeks ago), she was found to be short sighted. Is this another reaction???

Update: Brianna and I have now agreed on a part time schedule with the school, where she just attends the core subjects. However, we are finding that even doing just 2-3 hours at school on one day, makes Brianna feel so ill, and then she cannot attend school the next day – it’s a vicious circle.  She is also now experiencing intermittent pain in her legs and arms, in particular, near the site of the injection.  All her blood tests have come back clear and I have been advised that we have an appointment with the paediatrician on 13th December 2011.

Yesterday (2nd December 2011), I spoke to the matron about some hurtful comments other children were making when Brianna was in school e.g, “why aren’t you dead yet Brianna?”  I am sure you can imagine how upsetting this was to both Brianna and me.   The matron was disgusted and is going to speak to the pupils about how you should respect that people are unwell and not be nasty, in a forthcoming school assembly, without being specific about Brianna.  As if my lovely daughter does not have enough to put up with without having to listen to these terrible comments that are being said about her

We will never give up. We will continue fighting in our daughter’s corner and do all in our power to make certain those in authority are aware of the damage that is happening to many young girls throughout the UK.

Filed Under: Cervarix United Kingdom Tagged With: , , , , ,

Post-Cervarix Syndrome Victim: Emily, Wakefield, Yorkshire

November 30, 2011 By 7 Comments

Story as told by Caron, Emily’s mum

Post-Cervarix Syndrome Victim

My daughter Emily has always been bright, fit, healthy and energetic. She’s a member of many of the school sports teams, she dances competitively and lights up any room when she walks into it because every pore of her body exudes life – she’s an absolute joy to be around. Or, that was the case until last October when she began her course of Cervarix vaccinations.

Until last October, her medical history had been ‘unremarkable’, as noted on a recent letter from her pediatrician. She has always been extremely healthy and fit and has enjoyed a healthy, balanced diet. She is allergic to penicillin and suffers from hay fever.

She received her course of HPV jabs (Cervarix) through her school in October (2010), December (2010) and May (2011).  When she brought home the consent form, I wasn’t aware of any serious adverse effects and she was really keen to have the vaccination as it had been discussed at school.  The official literature claimed only mild and temporary side effects.

Three weeks after her second jab she became extremely ill with a flu like virus: vomiting, fever & chills, headache, muscle aches and weakness, extreme exhaustion, sore throat, severe abdominal pains, rash on her face and torso & dizziness. Medical advice was plenty of fluids and rest – she was in bed ill for three weeks. We put it down to a bad bout of ‘flu.’

Then the fun started! She would appear to be on the mend, then relapse with exhaustion, nausea, abdominal pains and dizziness. Her muscles frequently ached, her joints, particularly her knees often hurt and she had a constant sore throat and regular headaches.  This went on and on and for over 6 months. She had three full blood tests which were ‘normal’ and negative for glandular fever. The doctor diagnosed ‘Post Viral Fatigue’.

It was a terrible six months and as a family we ran the full gamut of emotions. ‘Tiredness’ seemed a lame excuse for missing school, so I put pressure on Emily to attend when she wasn’t well enough and felt terribly guilty for doing so, arguments were frequent as my husband I disagreed about what, if anything, was wrong and what to do about it. Emily became upset thinking that we didn’t believe how ill she felt and her classmates sometimes gave her a hard time about it.

As a mother I knew something was very wrong, something had turned off the light inside my daughter and I felt as though gradually her body was gearing down bit by bit. She looked and acted as though the life had been drained out of her.

Then one day in July the penny just dropped and I realized that her illness had started after her second HPV jab. A morning’s research on the internet confirmed there were many more girls experiencing the same symptoms – exactly the same symptoms! Everything fell into place.

From there, I contacted Freda Birrell through the SaneVax website. She has been my guide, giving me strength, putting me in touch with other parents and keeping me sane! Emily was referred to a pediatrician at Pinderfields Hospital(Wakefield), who diagnosed Chronic Fatigue Syndrome and said there was no treatment, she would gradually get better.  Two days after this pediatrics appointment, we were in A&E because Emily had lost the feeling in her right arm and right leg.  At the moment we’re waiting for Emily to get a referral to a different consultant for a second opinion – our GP has been very supportive and is currently researching the best option for us.

Emily is much better than she was at the start of the year, but still suffers bouts of fatigue and lethargy. She has a constant sore throat, frequent headaches and abdominal pain. Her symptoms change, so we never know what will present next. The latest has been a breathlessness that she gets from the slightest activity, like running up the stairs. She has good days and bad days, but her good days are equivalent to a pre-vaccination bad day.

None of the doctors we have consulted stated that they believe the vaccine to be responsible for Emily’s illnesses, although none have totally discounted it. From the morning the penny finally dropped for me, I have had no doubt whatsoever that Emily’s problems are a direct result of her Cervarix vaccinations and as I speak to other parents and research the vaccine, it merely confirms what I already know.

The final confirmation came recently when I requested Emily’s school attendance record. I had thought that Emily had been fine with her first jab, but three weeks after her first jab she was off school for one day in that week and three days in the following week.  Three weeks after her second jab she was very ill for three weeks.  Three weeks after her third jab, we were on holiday, during which she was tired, lethargic, emotional and moody throughout.

The three week lag between the jab and symptoms had stopped me from making a connection between the vaccine and the reaction and so my daughter went on to have all three jabs.  How many other parents are not making that connection and how many doctors are not making that connection? What would the adverse reaction statistics for the vaccine look like if parents reported all health problems for six months after each vaccination?

We are not warned that these side effects exist in the severity they do and for the length of time they do. And we are not warned that side effects can take weeks to become evident and that we should report them when they do.  When will GlaxoSmithKline be held accountable for keeping this information from the girls, parents, doctors and nurses?  It’s an absolute scandal that this is allowed to go on without further investigation.

The girls need answers, the families need answers and this pain and suffering has got to stop.

Filed Under: Cervarix United Kingdom Tagged With: , , ,

Cervical Cancer – HPV (human papillomavirus) Vaccination: How Safe Is It?

November 19, 2011 By 3 Comments

By Sherrel Halliday, Nairn, Inverness, Scotland

 

Deborah - August 2010

My perfectly healthy, academically bright, fun loving, sporty, active 13 year old daughter, Deborah, who enjoyed doing typical teenage things had the HPV vaccination, Cervarix, the 1st dose in September and the 2nd dose in November 2010.  She did not follow up with the 3rd vaccine.  Why?

Like every parent I wanted to protect my daughter from Cervical Cancer.  I read the leaflet, looked up the NHS website and spoke to the school nurse and her superior.  It’s safe.  But was it?

Now 1 year on I look back at my daughter’s life of pain, suffering, misery, doctor, A&E, hospital, rheumatologist, podiatrist, physiotherapist and hydrotherapy appointments.  The sleepless nights, the worry and my guilt!  Because, yes, I do feel guilty, that I did not do more research before I agreed to let my very precious daughter have the HPV vaccine. 

More than 1 year of our lives wasted.   I am questioning the safety of this vaccine.  How safe is it?  Every parent should question the validity of this vaccine and its safety record.

Sherrel & Deborah October 2011

One by one her activities stopped:  Judo, Roller Bowl, Cycling, Badminton, Basketball, Guitar, Piano and PE, to name but a few.  Stiffer and stiffer she got.  Unable to rake leaves in the garden or hoover the sitting room floor or open a bottle of water! Unable to go walks on the beach or in the woods with our two dogs.  Her enjoyment of life RUINED, taken from her.

Panicked by the realisation that I thought she had some type of paralysis, I had started taking her swimming every day before going to school.  A girl who was once agile, and had been able to swim 64 lengths reduced to 2 lengths using a float.  Day by day we attended the swimming pool building up the lengths.  Until one day out of the blue, at school, she collapsed.  She’d abdominal pain.  Rushed by ambulance to hospital she underwent an emergency operation for the removal of her appendix.  She had acute suppurative transmural appendicitis with peritonitis.  This was followed by 2 infections.  She missed 10 weeks of school.  Whether the appendix was associated with this I do not know for sure but I do wonder as it nags at the back of my mind. 

Despite the removal of the appendix, she was becoming sicker.

She walked with aid of a walking stick and could hardly put one foot in front of the other.  We got special insoles for her shoes to absorb the shock, similar to what the Police wear.  We bought a memory foam bed to help comfort the aching joints. She had to wear dark glasses because of light sensitivity.  This is so NOT COOL for a little girl of 14.

Then we watched a video by Grace Filby about mineral water. It seemed at first unbelievable that perhaps a simple mineral water could help.  But I was desperate for a remedy.  

Why mineral water?  Well it is rich in silica and silica is antidote to aluminium poisoning.  Aluminium being a neurotoxin contained within the HPV Vaccine.  I had to try it. 28 weeks ago my daughter started drinking 1.5 ltrs of a specific mineral water each day. 

28 weeks ago we were in the depths of despair.  But gradually we saw improvements.  After 3 weeks of just little things like small movements, I could feel hope coming back into my life. I started researching foods that contained silica.  It was in everyday things like potatoes, cabbage, onions, cucumbers, porridge, cereal, strawberries.  The improvement continued.  I worked hard – mineral water, foods, exercises, swimming, tiny walks, kept her motivated when things were bad, and she was determined to keep up with her school work.

Now she’s back in school with all teachers recently reporting how well she had done after missing 10 weeks of school.  She’s not fully recovered.  She can’t do PE.  But she can play the piano again and she swims a lot.  But we are not out of the woods yet.  We still have a lot of problems, obstacles to overcome like the fatigue, but I have faith.  We take each day as it comes.

So parents – after reading our story would you call this long list of illnesses a co-incidence?

Or would you question it as possibly a very severe adverse reaction to the HPV? 

Please think very carefully, think twice, research from independent sources and ensure that when you make this huge decision, that it is the right one for your child. 

In the meantime I’m trying to create awareness of the devastating impact that a vaccine can have when it goes wrong. I’ve written to various MSP’s with my concerns and asked them very serious questions. I would urge parents with any concerns to do the same.  I have also written to the First Minister, Mr Alex Salmond who has kindly replied and indicated that I shall receive shortly a reply from the Minister for Public Health, Mr Michael Matheson.

I have to say a special thank you to Dr P Coulter from Lodgehill Clinc in Nairn.  This GP has given us an outstanding service and has supported as consistently throughout this ordeal and done every test in the book to find a solution to her current unexplained symptoms.  His support is greatly appreciated.

If parents are looking for support, contact Freda Birrell via email at info@sanevax.org.  She too has been of tremendous help – just when I thought it was only me – she put me in touch with other parents with this unfortunate and horrible life changing experience.

If you would like more information on the mineral water that was so helpful for us, visit Grace Filby’s website at www.relax-well.co.uk.

Follow me on Facebook as I try to unravel this mess and as I try to get to the real Truth About Cervarix from Government Officials. 

Note:  Sherrel has written a poem to express some of her thoughts about Cervarix.  Please read it here.

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Melissa, Barnsley, Yorkshire, UK

November 19, 2011 By 1 Comment

Story as told by Alison, Melissa’s mum

My daughter used to live life to the full, loved being out with friends and it was not unusual for suddenly a troop of youngsters to come into my kitchen looking for their tea. It meant that the house was always full of life and I liked it that way. Melissa was very popular and she had a large group of friends. She was a sensible and mature girl too. She just loved her seven year old sister Brooke and she would take her to the park and mind her if I had to go out.

Then that fateful day when she told me “we are going to get  jabs at school”. I knew the vaccine was supposed to prevent the HPV viruses which could lead to cervical cancer but other than that I did not know too much about it. I had assumed I would receive more information from the school. Melissa had her first jab which appeared not to cause a problem and then after her second jab her joints started to swell immediately – starting with her right thumb then spreading to every other joint. Within a week Melissa was really ill. She could not physically move and was also covered in a rash from head to toe. She was experiencing high temperatures, sweats, chills, vomiting, severe headaches, pain in every joint and constantly slept for weeks. We could not even touch Melissa as she was so sore.

We had home visits from the local GP and visited Barnsley Hospital on a few occasions. The hospital sent her home with Piriton and said it was an allergic reaction to the HPV vaccine. Eventually we were referred to Leeds General Hospital to see a consultant, by this time Melissa’s health had really deteriorated. I was really frightened that I was going to lose her. Many tests and x-rays were taken which showed an enlarged spleen. After a little while the consultant diagnosed Melissa as having systemic juvenile rheumatoid arthritis (Still’s disease).

From that day Melissa has been on a high dose of steroids and drugs to reduce inflammation. She also was given a chemotherapy treatment (Methotrexate injections) but then after a while it was found that this was not strong enough on its own and after trying other combinations, they eventually introduced an infusion called Tocilizumab which after three months seemed to be working. By this time Melissa had been on steroids for such a long time that she had gained a lot of weight which has caused other problems.

Two years later and Melissa is still suffering, she is still on the Methotrexate and the infusion as well as having a Methylprednisolone injection if required. The downfall to having all of this medication is that she gets a lot of infections and has to have antibiotics a lot of the time. Melissa expects to be on this form of treatment for another three years – she missed the last two years of school including missing all her exams. She still struggles with day to day tasks and we have also recently had to move because our previous house could not be adapted to suit Melissa’s needs. Melissa still sleeps a lot and is very lethargic and has to be careful not to over use her joints otherwise she ends up being in a lot of pain.

I wish now I had never given my consent to her having the injection and would give anything in the world for my daughter to have her life back. Life before this vaccination was just wonderful for Melissa and I hope that one day she can recover enough to get some of it back.

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Lauren from Rochdale, Lancashire, UK

October 26, 2011 By 2 Comments

Story as told by Susan, Lauren’s mum

Lauren has always been the kind of girl who could never sit still for long. She went swimming every weekend with her friends. She loved any physical activities and was very strong. She had only been to the doctors twice in her life; once for tonsillitis and once with appendicitis. The appendicitis ended up with her being in hospital to have her appendix out but she recovered very quickly from this. Other than those two incidents, she was hardly ever ill, even with colds or flu.

I will now tell you what life has been like for Lauren after having one single injection of Cervarix. Lauren was only 12 when she had her first jab of Cervarix at the beginning of October in 2010. She came home that day telling me the injection didn’t hurt, this was said amongst other things that had happened at school that day but she wasn’t feeling too good. I put this down to the vaccine as they do tell you that you might get a temperature or feel a bit off.

A few days later she was complaining that her shoulder was hurting when she moved it. A couple of days after that her elbow was hurting too. She also had a rash in between the tops of her legs like nothing I had ever seen before. I thought it might be a heat rash, or perhaps from her legs rubbing together, but not related to the soreness in her joints. I took her to the doctors and he said it was most likely she had pulled a muscle and said to take ibuprofen for a week. She did this and after a week had passed I took her back to the doctors as her condition had not improved. The doctor then gave her Diclofenex and said she probably just needed another week of resting.

After that week had passed I took her to see a different doctor as her knees were now hurting and she was constantly coughing and feeling completely drained. He said he thought she had severe tonsillitis as she had a temperature as well and that this was affecting her joints. He put her on antibiotics. She just got constantly worse after this. All her joints swelled up, she was coughing, she lost around a stone in weight (14 pounds) and was covered in this rash which kept coming and going. It now reached the stage that she had to stay off school because all she was doing all day was sleeping.

Eventually, after numerous more visits to the doctors for blood tests etc, she was admitted to the children’s ward at our local hospital. At this point she was in a wheelchair because she could barely move and was in agony. There they put her on an antibiotic drip, again saying she had tonsillitis. This was over Christmas time, so they let her come home for a few hours on Christmas day to open her presents.

After the antibiotics did nothing, they just carried on giving her strong painkillers and decided to transfer her to Manchester Royal Children’s Hospital where there is a Rheumatology specialist. After about a week of being at that hospital and tests to rule out leukaemia, they diagnosed systemic onset juvenile idiopathic arthritis. They started treatment with a steroid infusion for 6 days and then oral steroids after that. They also started her on Methotrexate injections which she had to have weekly. Her condition did improve quite quickly after this new treatment started. She also had physiotherapy and we did some exercises at home with her everyday as well. After about 2 months the doctor decided to try and wean her off the steroids as she was doing a lot better and only had some pain in her knees, which they were going to inject with steroids and drain some fluid from them as well.

When they started weaning her off the steroids her symptoms started coming back. By the time she was down to 5mg of Prednisilone she was worse than ever and was readmitted back into hospital with fluid round her heart and hardly able to move, or breathe. After another 3 days on 1000mg Prednisilone drip she was feeling a lot better again. This time they decided to start another medication on top of the ones she was already on, called Anakinra which she was to have a daily injection of 100mg. They also discovered the Prednisilone was causing steroid induced hyperglycaemia. Her blood sugars were over 20, so we had to start blood sugar testing. They were going to put her on insulin but after Lauren argued that she didn’t want another injection everyday and that she would control her diet, they allowed her to try Metformin which has worked pretty well so far as long as she eats well.

At the moment Lauren has some reaction to the Anakinra injections and gets quite sore, and is getting itchy lumps on her arms but these aren’t lasting as long as they used to so we think her body might be getting used to tolerating it a bit more. The doctor is talking about putting her injections up to 2/3 a day because she does still get flare ups but at the moment she has been quite well for the past 6 weeks, she just gets very tired. If she overdoes any exercise or walking etc though she is in a lot of pain in the evening and gets a temperature and the rash.

She hasn’t been to school for almost a year so has missed a lot of school work and has also missed out on socialising with her friends.  Sadly some of her friends have called her fat when they have seen her because the steroids have made her put on quite a bit of weight so she cries about that. We’re just hoping that she continues to get better though the doctor has said she will probably be on treatment for life but they will review this when she has been in remission for 2 years.

My daughter has been training at the hospital to do her own injections every day which will save her having to go so often to the hospital to get all these jabs.  She has however had a bad flare up again just recently and the Consultant Rheumatologist decided that the Anakinra just wasn’t working so he has taken Lauren off this medication.  She is now on a fortnightly infusion of Tocilizumab and so far this seems to be working but unfortunately she is back up to 20mg of Prednisilone as well.

One good piece of news is that Lauren has now managed to get back to school for almost a month now. She has only had to take a few days off here and there when it is just too painful for her to walk. She also gets infections quite a lot as the Methotrexate is a chemotherapy treatment so it suppresses the immune system, as do the steroids and the Tocilizumab.

I should just like to say that there is no history of rheumatoid arthritis in the family at all. I would give anything in the world for my daughter to be able to get back to her life before Cervarix.

Filed Under: Cervarix United Kingdom Tagged With: , ,

Gemma from the UK

July 31, 2011 By Leave a Comment

SaneVax Introduces One More Cervarix Girl:  Gemma from the United Kingdom

By Norma Erickson

Gemma: United Kingdom

Gemma enjoyed school and was good at most subjects, but she truly excelled at sports. She played football, hockey, cricket, and rounders, all on championship teams. Her rounders team was unbeaten for three years running. In her senior year, she was netball player of the year.

The week before her 16th birthday, Gemma was busy planning an ice skating trip with a group of her friends as a birthday treat. All of a sudden, she began to feel dizzy and had a headache. Her parents put it down to just feeling a bit off, perhaps a cold. She didn’t make it to the party.

When the dizziness and pain persisted for a couple of days, her parents decided it was time to visit the doctor. Her blood tests came back normal. Gemma’s GP said she thought it was a case of vertigo, gave her some medication and told her not to use her MP3 player. Everyone assumed she would feel much better in a week or so. That was not the case.

As time went on, her dizziness eased up a bit; but the headaches became progressively worse. Intense pain was forcing Gemma to come home from school on a regular basis. Her vision began to deteriorate, forcing her to wear glasses. Her parents decided it was time for a specialist.

Gemma’s MRI (brain scan) showed nothing abnormal. Thinking it could be Basia migraines, a condition that affects mostly teenage girls, the neurologist composed a letter to her GP suggesting suitable medication.

Even though taking the prescribed medication, Gemma was not improving. She got through her exams (GCSE’s), but during the summer she became more and more withdrawn. The occasional trip to the Trafford Centre with a friend was all she could be bothered with. She spent most of the time in her room, by herself. As the headaches continued, her GP recommended different medications to no avail.

Her parents helplessly watched their daughter suffer, unable to do anything about it. Gemma’s condition deteriorated. The occasional day off school due to headaches turned into a week or two at a time. She was becoming a recluse, shut up in her room in terrible pain. Desperately her parents tried to come up with a reason for her condition. Suddenly, they recalled having to pick Gemma up from school on the day she had been vaccinated with Cervarix. Investigating on their own, they also discovered many others suffering the same symptoms after the same vaccine. Things were beginning to make sense.

They started taking information with them to Gemma’s now weekly doctor visits. None of the doctors seemed to be aware of the other girls throughout the United Kingdom having the same adverse reactions after their Cervarix vaccinations. After learning this, one of Gemma’s consulting neurologists had this to say about her new medical condition:

“As I discussed in clinic, I think that the most likely explanation is that the vaccine may have triggered an underlying tendency to headaches (such as migraine) which has persisted.”

As it turns out, Gemma received all 3 recommended doses of Cervarix. Because Cervarix is administered through a school programme in the United Kingdom, the parents are not necessarily told when the vaccinations are given. Gemma says she told her parents, but they cannot recall her doing so. It took them a very long time to discover that Gemma’s first trip to the hospital occurred the day after her third injection of Cervarix.

Gemma’s parents are hoping they can prevent others from going through similar experiences by telling her story.

Filed Under: Cervarix United Kingdom

Lara from Wales

July 31, 2011 By 1 Comment


Lara-before-Cervarix

Lara - Before Cervarix

SaneVax Introduces One More Cervarix Girl: Lara from Wales

Lara’s story is but another in the line of tragedies following GlaxoSmithKline’s “Armed for Life” marketing campaign for Cervarix.

Prior to Cervarix, Lara was every mother’s dream child. She didn’t cry, finished her bottles in the blink of an eye and was always smiling. As she grew, she began to remind people of the “energizer bunny.” She was always on the go, participating in every physical activity she could find. Lara rode bicycles, roller skated, played football, basketball, hockey, and rode horses. She enjoyed walking on the beach, surfing and swimming. Lara was constantly surrounded by friends and admirers of all ages. On top of all this, at only 13 years old, Lara knew what she wanted to do with her life – she was going to become a forensic pathologist. She worked very hard in school and her performance record showed it. In short, she was a girl who would make any mother proud.

Enter Cervarix. On 13 October 2008, Lara received her first injection of the HPV vaccine Cervarix. The day went without incident. Lara had no adverse reaction. Unfortunately, that was not the case with her second injection.

Shortly after her second jab, 17 November 2008, Lara started feeling very ill. She had a high temperature, sore throat, headaches, joint pain, and extreme tiredness. It seemed all of her energy was gone. Lara’s mom took her to the GP who put her on some medication to control the symptoms and sent her home. After a few weeks, she was able to go back to school.

Even though the package insert for Cervarix clearly states that further injections should not take place when an adverse reaction is experienced, Lara was administered the third and final injection on 31 March 2009. Shortly after, her perfect world began to fall apart. Lara woke up the morning after her third injection not feeling well. Her symptoms began with a very high temperature and difficulty walking. She lost her voice. Being the responsible student she was, she tried valiantly to attend classes. After three days, she could no longer handle it and had to stay home.

That was only the beginning of Lara’s new medical conditions. She started to experience extreme sensitivity to light. For days, she would have to sit in a darkened room because light hurt her eyes so badly. Things started to smell unusual, she began to lose her hair, had terrible headaches, and neck pain. Lara had trouble walking. Her legs just would not do what she wanted them to do. At times, she could not even keep her balance when she was sitting down. Probably the most disturbing symptom was the unexplained weight loss. When Lara started losing weight, her mom put her on a high calorie diet. In spite of all Lara ate, she still lost 3 stones (42 pounds) over the next few months. Lara is living a nightmare.

Lara-after-Cervarix

Lara-after-Cervarix

During this time, Lara was taken to eight different doctors at two different hospitals. Lara has been admitted to the hospital several times, but no one seemed to know what was happening to her. Frequently, she was prescribed painkillers, told she must have a virus and sent home. At various other times, her mom was told she was bulimic, just seeking attention, on drugs, or that it was all in her head. At least once, her mom was accused of being paranoid, the equivalent of Munchausen by proxy. Lara has now been diagnosed with CFS/ME, chronic fatigue syndrome/myalgic encephalomyelitis. Although there are many potential causes of this condition, one recognized possible cause is a vaccine-reaction.

Lara’s mom has been forced to watch as her daughter’s life is being ripped away. She has watched as her daughter transformed from the healthy, happy creature you see in the photo above, to the mere shadow of her former self you see on the right. Mom has had to sit by and listen as her daughter cries out in pain, even in her sleep. Mom is forced to watch her daughter try to complete her education at home because she was too ill to attend regular classes for an entire year. Worst of all, mom has had to face the unspeakable agony of hearing her daughter ask why the doctors cannot ‘put her down’ like they do animals when they are in pain.

Today, Lara is back in school but can only attend about half of the time. Sometimes, her mother has to physically carry her to school because she collapses on the way. Her teachers have agreed to modify her schedule and concentrate on classes that lead her toward her goal of becoming a forensic pathologist. Lara is still determined to reach her goal. She is just having an extremely difficult time doing it.

Lara has stopped socializing. She lives in self-imposed isolation. She is frustrated that she cannot just live her life the way it was. Every day her mother wonders what the future really holds for her beautiful young daughter. She faces every day in fear of losing her pride and joy.

Lara’s mom wants to tell everyone, “Do not take the huge step of vaccinating your child with Cervarix without doing your research. You need to know the potential risks, as well as the potential benefits before you decide. You can always vaccinate, but once it is done — you cannot change your mind.”

Filed Under: Cervarix United Kingdom

Sarah from the UK

July 31, 2011 By Leave a Comment
Sarah – United Kingdom

Sarah Chandler – Surrey

This is an extract from the article in the Daily Mail dated 5 April 2009

Sarah Chandler, 12, has chronic fatigue syndrome. She felt lethargic after the first jab, but her condition worsened after the second jab.

And a spokesman for GlaxoSmithKline says: “We understand that every adverse reaction related to vaccination is distressing for the girl and family involved and we take these reports seriously. We work closely with the MHRA to monitor any reactions to the vaccination. The majority of adverse reactions reported have been related to the process of injection, rather than to the type of vaccine, i.e. the most common side effect is soreness at the site of injection, which you would expect to see in any vaccination program. We remain confident in the safety profile of Cervarix, which was extensively tested through clinical trials and has been licensed for use in girls and women in the UK.”

But that is of little comfort to Cathy Chandler from Surrey, whose 12-year-old daughter, Sarah, has just been diagnosed with chronic fatigue syndrome. Her illness began a week after her first injection, in September 2008. She has barely attended school since November.

“I know I can’t prove the connection, but I’m as certain as I can be,” says Cathy.

Sarah had the second in a course of three Cervarix jabs in October. She felt ill and lethargic following the first dose. But after the second, her condition deteriorated. She was listless and her throat felt, and still feels as if something was stuck in it. Antibiotics did nothing to ease it.

“It took me a while to make the connection to Cervarix, but once I had, it all made sense,” says Cathy, 53, a part time administrator. “I panicked and thought, what’s happened to her? What have they done?”

In recent weeks, her health has improved enough for her to attend school for nine hours a week, but it looks unlikely that she will be back full-time for many months.

While Sarah’s doctors have never said they believe the vaccination is the cause, they have not ruled it out. Sarah’s doctor advised against her having the last injection of the course.

“Sarah was worried about missing it,” says Cathy. “The doctor explained that as HPV is sexually transmitted, you can reduce your risk of contracting it by avoiding unprotected sex, when the time comes.”

But, Cathy adds, “She didn’t say Sarah’s illness was linked to the HPV vaccine in particular - any vaccine could potentially have had the same effect.”

Filed Under: Cervarix United Kingdom

Lucy from Warwickshire

July 31, 2011 By Leave a Comment

Lucy - United Kingdom

Lucy Davies – Nuneaton, Warwickshire, age 14

Received Cervarix vaccination 21 September 2009 (one vaccination only)

Lucy awoke the next morning with total voice loss (Aphonia). She had an extremely sore throat and was feverish, plus she had pain at the injection site. We left if for a day or so, and then took her to the Doctors. He described her complaint as acute laryngitis. When queried over the possibility of a connection to the vaccination, he said, “No! Nothing more than a coincidence.” Although a known registered side effect was upper respiratory tract infection.

Lucy spent the next six weeks with no voice whatsoever. Her throat infection took three to four weeks to clear up. During this time, her joints had become painful and her legs were feeling weak, her swimming ground to a halt as she no longer had the energy.

(Note: Lucy was a competitive swimmer doing between 30,000/40,000 metres per week) Extremely fit young lady and a projected “A” pupil at school, with a very active social life.

In the meantime, her doctor had given Lucy lots of blood tests. She had also been seen by an ENT specialist at the hospital and she was seeing a voice therapist. Her voice returned to a whisper after about six weeks and with further help from the voice therapist, it is now back to normal.

Then, on 28 November 2009, Lucy suffered what appeared to be a severe fit of some description. Started complaining of extreme heat feeling and started to sweat profusely, heart racing and blood pumping, she then blacked out and had severe trembling of her arm and leg. She was carried out of the building and 999 was called. The paramedics revived her. Her blood pressure was very high and her heartbeat was over 150.

When they got her to the hospital and stabilized her, they said that she had had a panic attack which led her to hyper-ventilate. However, since that moment, Lucy is unable to walk properly. Her leg and hand still shake. We have seen a consultant at the hospital who said that he cannot find any evidence that she had had a seizure of any kind, and promptly discharged her.

This coming from a general consultant. Again, when asked about any link to the vaccine, there was no comment. He agreed with her GP’s analysis that Lucy was suffering from CFS (ME). An appointment was made with a Neurologist.

Lucy now attends school in a wheelchair and is very despondent over her situation.

Lucy’s Update (as described by her father, 25 March 2010):

We made our visit to Lucy’s GP, Dr. Burnett, two weeks ago now. Lucy has been seeing a different GP up until now, a Dr. Johnson, whom I must say for the first couple of months seemed very caring and worked tirelessly to try to find an answer. I guess that once he had seen the report on Lucy from Dr. Wood, who was the General Consultant at George Eliot Hospital, he more or less accepted his findings. After the blood tests and examination, he discharged her and thought there was no need for any further invasive investigation, although he had not found any answers, he preferred to discharge her. I found him to be very dismissive. I then got the impression that he felt there was nothing left for him to do and his diagnosis of ME was probably the correct one. Certainly the last occasion that my wife, Jill, visited Dr. Johnson with Lucy, she got the feeling of “oh what do you want now”!! Subsequently, I have contacted several leading hospitals in London with reference to Lucy’s condition and one doctor has expressed an interest, but has said that he would like to see Lucy’s medical records, which must include a report from a Neurologist.

So, I requested Lucy’s medical records in a letter from the GP’s on the 23th of February 2010, quoting that they must include all relevant correspondence and this must be legible and made ready for me within 12 days of receiving my letter. This is in accordance with the statutory agreement from the Secretary of State.

Alas, I have not received them yet, and had to chase them up yesterday. In between times, we visited Lucy’s own doctor, Dr. Burnett, who seemed very focused on Lucy and her thoughts, almost to the exclusion of us. I got the distinct impression that he thought we were coercing Lucy into pursuing this course of action. Having gone through her whole episode, he agreed, I feel somewhat reluctantly, to refer her to a Neurologist.

We promptly received our Choose and Book Appointment sheet, but are waiting for Birmingham Children’s Hospital to release some appointments. In the interim, we have insisted that she see a Physiotherapist, and have pushed very hard for this. My wife, Jill, made a real nuisance of herself, but was successful in getting an appointment with a great physiotherapist at the George Elliot Hospital, who has shown great concern over Lucy’s plight and was very sorry that he had not seen her earlier.

WOW !!! How good he has been for Lucy! Straight onto the crutches and out of the wheelchair at every available moment. Most days at school, it is crutches only now. We have taken her out on her crutches and she is far more confident and happy on them, rather than in the wheelchair.

Lucy turned 15 on Tuesday and had a great day! She was really positive about her future. I cried for hours that night with hope and joy. She is now coming to the end of her 3 month stint of drinking 1.5 litres a day of silica-rich Volvic water, as per the research of Dr. Chris Exley, at Keele University, into aluminium intolerance. I think it can only help and we are very greatful to him.

Please note:  Lucy’s side effects started the day after vaccination and have changed as time has gone on. Her later problems of losing consciousness and trembling arm and leg have also been experienced by many other girls who have been vaccinated either with Gardasil, or Cervarix – the graphs on Miscellaneous Symptoms confirms this. The term ‘panic attack’ is used to cover this experience, but does not explain why a young, fit girl’s arm and leg would suddenly tremble and remain that way, preventing her from walking properly. Her previous health history surely has to tell a diferent story where these types of incidents just did not occur. (Freda Birrell – Editor)

Filed Under: Cervarix United Kingdom
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