In November 2008, my 17 year old daughter Krystal passed out at home for the first time ever (only for a matter of seconds). After a trip to the Emergency Department we were told that this happens to a lot of teenage girls and it wasn’t anything unusual. By January 2009, Krystal was passing out nearly everyday and I was having to pick her up from school (on the days she still went) by lunch time.

We were sent to a cardiologist in Wollongong who sent us to his colleague at the Royal Prince Alfred (RPA) hospital in Sydney. After having many heart monitors attached and a EPS (Electrophysiology Study of the heart ) plus Echo scans and many days’ stays in Cardiology wards we were told that there was nothing wrong with her heart. We then went through the same process with the Neurology side of things and were given the all clear, although a specialist at Wollongong hospital still believes it may be fits coming from the centre of her brain that weren’t picked up while others think that it could still be her heart … nobody knows.

By Feb/March Krystal was passing out everyday; sometimes twice (the average time she was unconscious was half an hour). She was bedridden, if we tried to take her out she had to be in a wheelchair but even that was to much for her. Obviously, she had to leave school (year 11) and her part time job at Bakers Delight that she had held from the time she turned 14.

On Tuesday 23 February 2010 we saw yet another specialist at the RPA who believes Krystal may have a Post Viral Disorder. When Krystal mentioned in passing the Cervical Cancer Vaccine and the fact that this all started during the vaccinations, the doctor agreed that its very likely Krystal has had some sort of reaction to them. I could not believe it. After all this time this is the first time that somebody has taken the Gardasil vaccination on board and seen them as a link to what’s been happening to our daughter. When we first asked our GP if there could be a connection he dismissed it so quickly that I felt silly for asking.
Some of Krystal’s symptoms included: Passing out, Headaches/ Migraines, Nausea, Poor circulation, Light intolerance, Feelings of hot and cold, blurred vision (usually with the headaches), Irregular heart beat and general physical weakness. All of this in a bright, healthy, independent, social, happy teenage girl with no prior illness!

As for our home life we quickly got to a stage where we realised that it was to dangerous for Krystal to walk anywhere by herself and somebody had to be with her at all times she was on her feet for fear of a head injury as she had no warning when she passed out. So I gave up my full time work .We made this decision after a few very frightening experiences. The first one was when she passed out in the bathroom and hit her head on the back of the door (thankfully not the edge of the bath or vanity) and I couldn’t get in the bathroom as her body was blocking the door. Another time Krystal passed out in the kitchen and I was in my bedroom so I hadn’t actually seen her fall (although I heard it), but I hadn’t seen if she had hit the corner of the bench and when I got to her, her eyes were open but she was unresponsive (for around 10 minutes ) and had a very weak pulse….I actually thought I was going to lose her. Obviously that involved two more ambulance trips.
After that if Krystal needed the toilet or a bath (she has passed out in the bath ), I took her. Even just to go from one room to the next either myself or my husband walked with her. We took our phones to bed in case she needed the bathroom at night and I often got up to check on her. We also had carpet laid just in case to make a softer landing than the polished floorboards. Stairs were out as the exertion was to much so far too dangerous … Krystal didn’t see downstairs at home for 9 months (our main living area and front door are upstairs) and we all had a big laugh at her first time back down because it was like seeing it for the first time!

Luckily, Krystal is an extremely positive, happy and intelligent teenager who has kept the belief that she WILL get better and this is only a hiccup in her life. I think she had to believe that or else she would have fallen apart. Even during the worst time she tried to learn Italian and guitar to keep her mind active. Since she has been feeling better for the last 2 months (she still has bad days but also has really good periods), she has hit the ground running with her studies and her wonderful boss and staff at Bakers Delight have welcomed her back on a few short shifts to see how she goes. They watch her very closely.

I cannot change the fact that Krissy did get the Gardasil injections but the next best thing is to:

a) Get Gardasil off the market;

b) Inform as many people as possible of the potential side effects so others can make more informed and educated decisions than we did …

I cannot begin to explain the toll this has taken on Krystal’s life and our family and I would love to be in touch with anyone who has experienced similar problems to learn more or help someone else if possible.

On 27th March, 2008, I received my first cervical cancer vaccination dose. The second vaccination was on 5th June 08 and the third on 19th Nov 08. In November 2008, I passed out for the first time.
My mother, who thought it best to go to the hospital just to be safe, had her mind eased when we were told it was probably just low blood pressure.
Then, in January 2009, I passed out for approximately 10-15 seconds at school. I was sent home, and we again went to the hospital, just to be told by a doctor that “some girls just pass out”.
When it started happening for a third time, and then a fourth and so on, obviously we started worrying. We went to our GP and he recommended that I wore a halter monitor for 24hours which showed I had an irregular heartbeat.
As all this came on, I started getting bad headaches and migraines, which I have never in my life had. I would feel sick and queasy in the stomach, like throwing up, daily. The colour from my whole body was literally drained, I was as white as a ghost.
By now, this was occurring on a daily basis, so we were referred to a local heart specialist in Wollongong. He recommended that I wear another halter monitor, have a CAT scan, and an EEG neurological test. I received all three, with the CAT scan, and EEG neurological test coming out clear.
I received the same results with the halter monitor as I did with the last one; I was having palpitations, my pulse would start racing highly all of a sudden, and an irregular heartbeat was recorded. The specialist in Wollongong, believed I had a case of Vaso Vagal, but decided to send us to a more qualified heart specialist in Sydney.
The specialist in Sydney, believed I had an irregular heartbeat, which was shown even whilst sleeping. My heart rate would increase dramatically, at the slightest changes. If I was sitting down, my pulse would be normal, around 70-85beats, then when I stood up, the monitor recorded that my pulse increased to 180beats. When I was in hospital, if I would stand up to walk around the corridor, my monitor would constantly beep, because my heart rate had increased so dramatically. The heart specialist recommended I have a mini operation on my heart (called an EPS) to determine whether anything drastic needed to be done.
After the operation it was determined that there was nothing wrong with my heart. When I was coming-to, from the anaesthetic, I started having what looked like a seizure, only when the neurologist came to help, he said it wasn’t a normal seizure. I hadn’t wet myself, did not bite my tongue etc.  I stayed in cardiology at RPA for a week during that time and even though I passed out in the shower and my heart rate would go through the roof if I stood up and was generally unwell all day, they couldn’t find any answers. My heart specialist, then transferred me over to this neurologist, who put me on a waiting list for a week long EEG, to see if my 20minute long EEG (that I’d had previously) had missed anything.
I had gotten so bad, that by March I had to leave school, because I was only there for a maximum of an hour, before I’d passed out again. My length of my pass outs were increasing dramatically, it went from 10seconds, to five minutes, then ten minutes, fifteen, etc.
When it was time to have the week long EEG, it had gotten to the point where I couldn’t walk ANYWHERE. If I was exposed to too much sunlight, I would pass out, or get a migraine. Sitting upright in the wheelchair for too long, would cause me to faint. My blood pressure was permanently low. I could do nothing, and go nowhere. I couldn’t even walk myself to the bathroom without someone needing to come with me. All dignity was lost, and I would get so frustrated with the fact that I could do NOTHING on my own. Trying to stay positive was difficult, but I would not let myself melt down and come to pieces with whatever this was. That would just make things so much harder, not only on me, but my family and loved ones. Having a shower, obviously, was out of the question, as my blood pressure was permanently low at this point. So I would have a bath instead. One time I got so frustrated with anything and everything, and I just wanted to have a bath on my own for once, which before all this happened, I would be able to do freely whenever I wanted.
And of course, I passed out in the bath. That was so scary, one of the most terrifying moments of my life I think. I remember waking up, and my Mum and Dad were pulling me out of the bath, I had no idea what was going on. I just remember coughing up the water, I was so scared, and I remember mum’s face, she was terrified and crying I think. This was my life for over a year.
Hospital trips, ambulance rides, and then the hospital stays. The worst thing was, we had no idea what was happening, and what was causing it. The days that I wasn’t in hospital, I was at home, all day, every day. Being in the wheelchair was such a horrible experience for me, I hated it.
We would go through times when nothing would happen for a week or two, and I would get so excited, thinking whatever it was that had been ruining my life, had finally left! When I then passed out, it was heartbreaking. I wanted so badly for everything to get back to normal.
It started getting scary; the amount of time I was unconscious for was increasing dramatically still. The longest time I have ever been unconscious for was 40minutes straight. That was when the hospitals finally started taking things seriously, and doing tests, and more tests, which finally led my family and I, to discovering that it could be from having the three cervical cancer vaccinations.
If only people knew how much this has impacted not only on my life, but on my family’s life too. Having no idea what was going on, we all thought that this might be a permanent factor.
There were times in that period, where I thought I was going to die. Times where I’d passed out on a main road, outside on my driveway, in the bath, in the shopping centre, when I was asleep and when I was home alone (after we thought I was getting better). The impact it has had on my 8 year old sister, is just heart breaking. I remember on her birthday, Mum and I went shopping for her birthday cake, and I passed out in the shops. I felt so horrible that I couldn’t be there, and that Mum had to stay in hospital with me. My sister wasn’t left alone with me very often, but there has been a time where I passed out on the driveway, and she was the only one here. That was heartbreaking, that she had the weight of that on her shoulders.
I am infuriated that I had to postpone 18 months of my life, leave school, not be able to drive, not be able to work, have no social life. I had to live with this EVERY DAY. There was no escape, I virtually could do nothing. I am outraged that it has taken so long for my family and I to find out the true cause of this, and I believe we deserve to be heard from. This vaccination should never have been allowed into Australia without proper testing.
I will not stop until we have been listened to, and action has been taken, and this vaccination is taken off the market completely.


Naomi’s Story (Melbourne, Australia)

The video of my story is

I was a happy healthy 25 year old girl working full-time and studying and to complete a degree at Monash University. I went to get my gardasil vaccination after being prompted by the strong government campaign. I was never asked whether I was pre disposed to auto immune conditions, had a compromised immune system or had any family history of such. If I had of been asked I would not have gotten the shot. After my first shot I had a really sore arm for weeks. I have never experienced that before with other vaccinations but at the time I thought it a small price to pay to reduce the risk of cervical cancer.

I went in for my second shot and was never asked if I’d had any problems since the first shot. A few weeks later I started having some problems with my legs. They felt stiff and walking wasn’t as easy and it should be. I couldn’t get comfortable at night and my hands and feet kept cramping. I was also experiencing moving pains and was in quite a bit of discomfort. I started to get regular phsyio, massages and cupping therapy to alleviate my symptoms. I was also running (about 5kms a day) as I thought this may help loosen me up if my pain was postural. It never occurred to me that it could have something to do with my vaccination.

I went for my third gardasil shot and was never asked about my health post the initial two vaccinations. Within a week my knee became inflamed and then started collapsing underneath me. My pains became debilitating and I could not sleep at night. All my joints were aching and even made a clicking noise when I tried to go up or down stairs. My knees had a spastic feeling when I tried to walk and my legs became very shaky. My knee seized up and locked in a bent position.

My doctor ordered some blood tests and they showed up a positive ANA test which is indicative of some kind of auto immune problem. I was in a bit of a mess and was put on 25 mg of prednisolone and referred to a rheumatologist. The rheumatologist told me that my problems were probably down to ‘anxiety’. I have never heard of anxiety giving anyone an inflamed knee before but she was getting paid the big bucks… I refused to accept what she was saying and so she ordered an MRI.

Apparently steroids (like prednisolone) can take evidence from your MRIS so I had to stop taking them in the lead up to the MRI. And then my world fell apart… I was so weak and shaky I could not stand. My body was tingling and numb and all of my bodily responses felt delayed. I could not feel strands of hair when I picked them up. My feet were cramping and I was dropping things. I was going to the toilet all the time! My legs were jumping and giving me shocks, tremors and mini seizures. And then I got dissociation from my legs. My legs did not feel like they fitted on my body. I would walk and it didn’t feel like I was using my own legs.

My skin felt uncomfortable at times as though it was crawling and didn’t fit properly. I was also feeling dizzy, tired and sick and could not follow the Dr’s pen with my eyes. My eyes were jumping and playing up randomly. I also got sick with some kind of gastro bug and I kept vomiting until I had to go to E.D. I have never been melodramatic when it comes to health and I actually think I have a high pain threshold but tt one stage of that visit I did actually fear that I might be dying, though I was assured I would not.

My MRI showed up a lesion of demyelination on my brain indicative of an episode of multiple sclerosis and I was sent to see a neurologist. She explained to me that it was not a typical result and further evidence would be needed for any kind of diagnosis. I did an evoked visual response test and passed. The follow up MRI (6 months later) showed no progression of the demyelination since steroid treatment and finishing Gardasil. I have changed some meds for neurological conditions, pain and am slowly weaning off the steroids ½ a milligram at a time. Every time I reduce my dosage it knocks me around and gives me chronic fatigue. So far I have reduced my dosage by more than half but I still have a long way to go.

Fourteen months after my last vaccination I still have chronic fatigue syndrome, pain and some neurological difficulties. I have my fingers crossed that my steroid use will not result in diabetes or osteoperosis. I know I still have a long hard fight ahead of me. I still have no formal diagnosis or medical explanation as to what has occurred. All I know is that there is a lot of other girls with the exact same story as me and the only common thread we can find is Gardasil.



Jessica’s Story  (USA ) – as told by her mother Malinda

My daughter, Jessica, had the Gardasil Vaccination between August 2006 and April 2007.  She had her first one before she left for college. Shortly thereafter, she started calling us and telling us that she was losing a lot of hair.  Next came the stomach aches.  Soon, she had such bad stomach aches.  Soon came issues with constipation. We had gone to a few doctors that tried her on Irritable Bowel Syndrome medicine and probiotics for stomach acid.  Nothing seemed to make a difference.

Over the next two years her symptoms progressively got worse. Also, in the meantime we went from one doctor to the next.  We even went to Mayo Clinic in Rochester, MN. Their final diagnosis was Chronic Fatigue Syndrome and Fibromyalgia. Why?  What caused this to a girl that used to be perfectly normal, healthy, athletic and super bright?

Her symptoms have progressed  to extreme fatigue, swollen lymph nodes, inflammation, achy muscles, sores in her nose, bladder infections, yeast infections, abnormal pap smear,  insomnia, heart palpitations,  foggy concentration, headaches,  extreme stomach bloating and stomach pains, horrendous menstrual cycles,  and an overall ill feeling.  Never really feels good.  Some days are worse than others.  Jessica can get a good night’s sleep and then feel like she has a hangover in the morning.

Some of the issues I am concerned about with her is did Gardasil push her body into menopause?   Will Gardasil cause her cervical cancer? Will Gardasil cause her to have infertility issues?  Did Gardasil push her body into an auto immune disorder which causes this overall general ill feeling she has??

We are currently using food supplements and vitamins to try to make her feel better.  It seems like she may have a better day and then boom, the next day is not soo good.


Elif (Australia)

My condition got worse after the second and especially the third vaccination (2008 July). As nobody informed me of the adverse side effects, I unfortunately kept having the last shot. Simultaneously, I also had a gynaecological problem which ended up being a chronic inflammation and chronic pain condition.

My first symptoms were numbness, pins and needles in the extremities, nausea, extreme fatigue, dizziness, confusion, depression, seizures, trembling, metallic taste in the mouth… I also had a major Candida outbreak, which is still present. It is unfortunately getting worse and worse, although I’m on a diet and I tried taking some antifungals, nothings working, my immune system is falling apart. I am currently diagnosed with Chronic Fatigue Syndrome, Fibromyalgia, Vulvodynia, and my recent test results show that I am also developing an autoimmune disease, in addition to chronic inflammations in my body.

For treatment and management, I’m having a rest and avoiding food allergies to speed my recovery. I have visited at least 10 doctors and none believed that the vaccination was the cause of this. This broke my trust and made me vulnerable as I don’t know where to seek help from. Even though I’m convincing myself that maybe there is nothing to do but wait, I am developing new symptoms and not knowing how to deal with managing and treating them. I recently developed an inflammation in the back part of my head with severe pain and burning sensation, this is a new symptom and again, confusing. This whole experience is very difficult to deal with, both emotionally and physically. I do believe that things would be easier with less damage if medical professionals were informed properly and careful with what they are doing. I really feel like a victim and still hoping to find a solution and help.

I’m writing this about my daughter so that anyone who may read this will know what happened to my beautiful daughter Megan.
Last November 15th 2008 my daughter Megan had made plans with the family to paint the outside of the home. We live in New Mexico, USA and it can still be pretty warm in late fall.
She had called that morning and asked what time I wanted her over and I had told her that she could come at any time. It was early in the morning, still a little cool and I had told her she could come and we would get started after it had warmed a bit. She said,  “OK Mom I’m going to get in the shower and then I’ll be over.”
Megan lived about 6 miles away. She was going to college and had her own place. She was 20 and would be 21 in a week and a half, Thanksgiving Day.
The family started painting, we broke for lunch, no Megan yet. We finished up lunch and went back out to continue painting. I thought about her not showing up yet but I figured she changed her plans, forgot to call, or her boyfriend and she decided to go do something. Not a worry. Kids, right?
I got the call, come quick. I did. I got there to see emergency vehicles everywhere so I just stopped my car and ran. I saw in her room the EMTs working on her. It was too late she had been in the shower for about two hours. My beautiful daughter was gone.
The pathologist told us that there was no cause of death to be found. We had asked about the Gardasil as we knew Megan did not drink, do drugs or smoke. The pathologist said that they could not find a cause to her death. We still have no answers and still continue to search. They did say however that her lungs were filled with foamy fluid. Many of the parents who have lost their daughters and who have had the Gardasil vaccine have had this same diagnosis. Not that this is the cause of death. Could it be a seizure? Could it be some kind of breakdown of their lungs?
At first we thought she had fallen in the shower and hit her head and drowned but that was not the case. The showerhead was found turned toward the wall and she had gotten herself on her knees and laid her head on the edge of the tube and passed away, the water was not in her face.
Megan had some of the symptoms that other young women who passed away have experienced. She was extremely fatigued. We thought it was just her classes etc. She had had a rash on her face. Migraine headaches. Megan also had severe pains in her stomach. She had these pains the night before she passed away. She also had told me she felt like she was getting the flu.
We all need answers: why are these young women having these symptoms after the Gardasil vaccine? The symptoms are all similar but these girls are being told that the medical field does not know what is happening and they also tell them it is not the vaccine that has caused their injuries. Why is it that no one is helping to find out what the problem is? It makes us all wonder what the Government is up to when they will not help in solving this problem and yet more and more girls are coming down with these same symptoms who have had the Gardasil vaccine. Not just here in the US but there are reports of these same symptoms worldwide.
If you are a parent or a young woman reading this and are thinking about having the Gardasil vaccine, please research it yourself before you make your decision.
Most of my adult life I have lived with the knowledge that I am at increased risk of cervical cancer. As a DES Daughter I have a lifetime risk of a rare clear-cell cancer of the cervix/vagina. This cancer, causally linked to in utero exposure to DES, is aggressive, symptomless and the usual Pap smear will not pick it up. I have to have an annual “DES examination” that involves colposcopy.  (For more on the DES story: )

In addition, also because of my DES exposure, I have a 4-fold increase risk of squamous-cell cancer of the cervix – the cervical cancer the Pap smear is designed to detect.
Since first finding out I am a DES Daughter (nearly 30 years ago) I have learnt to live with this risk, to put it into perspective and get on with my life. Part of this process involved becoming informed about cervical cancer by reading medical journal updates. More important, however, was the sharing of experiences with other DES daughters. In this way over the years members of DES Action have built up a unique knowledge base and “expertise” of cervical cancer, from the consumer perspective.
So when there was news of a “cervical cancer “vaccine being developed, we naturally were very interested and read up on it. However, the more we read, the less sense it made. It wasn’t a “cervical cancer” vaccine but a part-vaccine for HPV. The unanimous consensus we came to was “Why bother?” [As outlined in ‘Gardasil: All cost and no benefit.’]
We were very concerned about the “hard sell” the pharmaceutical industry was using to put pressure on the Government to have Gardasil listed on the National Immunisation Program.
But our greatest concern, based on our DES experience, was the lack of evidence of long term safety of the drug. Could Gardasil, like DES, be a time-bomb with serious, unforeseen adverse outcomes emerging months, years or even decades after the initial injections?
Here is an extract from DES Action’s newsletter DESPATCH, March 2007:
Gardasil: Hype & Hard Sell
by Marian Vickers
Last November saw the most extraordinary example of manipulating the media for commercial gain when CSL, which shares Australian marketing rights for Gardasil with Merck, orchestrated the listing of this new cervical cancer vaccine on the National Immunisation Program.
CSL’s initial proposal was rejected by the Pharmaceutical Benefits Advisory Committee (PBAC) because of “uncertainty about the duration of effect and unfavourable cost-effectiveness.”
All hell broke loose and the first casualty was informed public debate. What followed was emotive, sensational lobbying and political opportunism, culminating in political interference from the highest level when the Prime Minister, John Howard, intervened and effectively vetoed the PBAC decision.
This “decision-making by media” has compromised the PBAC and potentially Australia’s drugs safety system.1
The lack of informed public debate has made decision making difficult on a personal level. Many parents will be wondering whether to recommend the vaccine to their daughters. Given that the vaccine is targeted at young teenage girls, there is an issue of informed consent. Next month the school immunisation program commences and consent forms will be sent home. How are parents meant to make an informed decision on behalf of their daughters? Just how effective and safe is this vaccine?
Because of the DES experience, I’m most interested in looking at drug safety. A concerning aspect of the debate on Gardasil is the lack of information on its safety, particularly long-term safety.
In the media, any mention of ‘safety’ is in fact talking about ‘efficacy’ – i.e. will the vaccine work for a lifetime, or is a booster necessary? Worryingly, in the government “fact sheet” for health providers, there are only 2 sentences relating to ‘safety’:
“Gardasil is generally well tolerated, with a small increase in reports of injection site reactions and fever compared to aluminium containing placebo (injection site reactions 83% vs 73%, fever 13% vs 11%). Very few serious adverse reactions were reported in clinical trials.” 2
There is no information on how long the clinical trials went for, and whether any large-scale trials were conducted on 12-13 year old girls.
Given that there is going to be wide-scale immunisation of thousands of young girls starting next month, the health authorities better be very sure there will be no unforeseen, unexpected side effects in the future. It would be truly tragic if the young girls receiving the vaccine faced an increased risk of, for example, infertility or autoimmune disease in 5, 10 or 20 years hence.
Hopefully animal modelling studies have been done to rule out this possibly.
1. Gina McColl: ‘Health care’s sticking point’, The Sunday Age, News Extra 12, February 25, 2007
2. Fact Sheet ‘Human papillomavirus vaccines for Australians: Information for GPs and immunisation providers’, National Centre for Immunisation Research and Surveillance of Vaccine Preventable Diseases, page 4, September 2006
From DESPATCH #54, March 2007, page 1

At the time of writing this my 2 daughters were aged in their early 20s and therefore not part of this school vaccination program. I might have mentioned in passing that I thought they didn’t need Gardasil, but I didn’t make a big deal of it.
What I didn’t realise was that the “hard sell” had been extended and was directly targeting all young women. During 2007 every time my daughters went to the doctor for some other reason, they were urged (one could almost say harassed) to have their Gardasil shots. They each received letters from various medical centres they had attended in recent years. These letters were sent out to all “eligible” young women urging them to have Gardasil while it was free. [I only found this out later as my daughters were not living at home but sharing a unit a couple of suburbs away.]
My younger daughter, aged 24 years, had the first 2 shots of Gardasil in late 2007. In March-April 2008 she had to take a number of sick days off work due to extreme tiredness and lethargy. She had a test for glandular fever (it was negative) and upped her intake of vitamins. Luckily she didn’t get around to having her 3rd shot of Gardasil and, after seeing what happened to her sister, she gives a serve to any doctor who suggests it!
My elder daughter Zoe was fit and healthy in May 2008 when she passed a thorough medical examination. Two months later – and one month after receiving the 3rd Gardasil injection – she was a housebound invalid: she couldn’t walk, drive or work.
I bought her a “health diary” and she recorded her symptoms, what she ate and what medication she was on. Looking back over this diary I don’t know how we got through those following weeks. I’m just so impressed with Zoe’s strength of character.
Her symptoms started off with a terrible rash (urticaria) which she had every day for 7 months. Her face would swell up (angioedma) so she looked like a boxer who had lost a fight. Her tongue had strange bald patches on it. She was having weekly blood tests. Initially these were normal but then her CRP levels (an indicator of inflammatory disease) were elevated and getting higher by the week. Her wrists and hands were swollen like severe rheumatoid arthritis. They ached and she had trouble holding things. Her knees and ankles were swollen and aching. The soles of her feet were so swollen she couldn’t walk and could only hobble short distances. There was inflammation of connective tissue and more tests were ordered looking for Lupus. By the end of July she started getting indigestion, gastric problems, severe abdominal pain and gastric reflux. She had 3 episodes where her throat swelled up and she had trouble breathing. In early September, while being examined by a Rheumatologist, a suspected heart murmur was picked up and she was sent for more tests. When she’d had the medical 4 months previously in May there was no heart murmur present.
Any one of these symptoms is painful and difficult to deal with.  To have them occur suddenly, all at once, and with increasing severity was distressing and very frightening -particularly when the treatment (high doses of antihistamines) wasn’t working.
During this time Zoe’s younger sister was put under enormous stress as she had the responsibility of looking after Zoe on a day to day basis.
A breakthrough, in terms of understanding what was going on, came mid- August when we were given information on Ketotifen, a mast cell stabiliser. Apparently people with chronic urticaria and angioedma do not suffer from specific allergies, but rather an unstable mast cell system. According to the fact sheet, the unstable mast cells leak histamine, prostaglandins and leucotrienes, which result in other associated symptoms. For example, due to the release of these chemicals, patients also suffer from headaches, tiredness, lethargy, irritability and difficulty in concentration. It can also affect the gastro-intestinal tract causing cramping, bloating, indigestion, regurgitation, flatulence, intermittent diarrhoea and constipation. Many patients suffer from joint pains and muscle pain. These symptoms are due to the inflammatory properties of leaked histamines, prostaglandins and leucotrienes.
As the Clinical Immunologist we saw in October explained, unstable mast cells underlie autoimmune responses. So finally we had a diagnosis of Zoe’s condition that explained the symptoms – chronic uritcaria/angioedma, an autoimmune response due to an unstable mast cell system.
Having a diagnosis was only the beginning of the journey. Doing a rush job on reading up on the immune system and autoimmune disease left my head spinning.
Quite by chance the ABC TV program ‘Catalyst’ ran a special on ‘The Immune System’, 7 August 2008. The gist of the program was that our immune systems are fantastically complex, responsive and adaptive. Science is only now starting to unravel the wonders and complexity of the immune system.
Even more complex is the autoimmune response: this is when the body’s immune system defences turn back on itself and start attacking healthy cells and tissues. Autoimmune diseases include asthma, rheumatoid arthritis, irritable bowel, motor neurone disease, multiple sclerosis. What triggers this autoimmune response is unknown. Why some people get it and others don’t isn’t understood.
That’s why I get so angry when I think about Gardasil. Here we have a vaccine which deliberately meddles with the individual’s immune system. It is a new type of vaccine never used before. It uses new technology – recombinant DNA technology (which is like cloning) – to trick the immune system and artificially rev it up. No thought of triggering an autoimmune response, all they look for are injection site redness and fever within 24 hours. How dare they! Talk about irresponsible cowboys. Boys with their toys!
I think the diverse and varied adverse reactions to Gardasil may be immune responses. Our immune systems have evolved over eons. We are programmed with primitive survival reactions. Everyone has heard of the “fight or flight” reaction. However it appears there may be a 3rd primitive programmed reaction: “freeze”. When studying humans under extreme duress, researchers have found that people often become lethargic, they freeze up, shut down, becoming limp and still. This may be a primitive survival response – playing dead may discourage a predator from attacking. [Refer to ‘The Unthinkable: Who Survives Disasters – And Why’ (2008) by Amanda Ripley]
So maybe the many reports of girls fainting or experiencing temporary paralysis can be explained as an immune response – a response to the assault on the immune system by Gardasil.
It’s time to start asking questions of the drug manufacturers and the drug safety authorities. Specifically, exactly what studies were done prior to its release to show Gardasil is safe, that it doesn’t trigger immune/autoimmune responses? Where is the evidence of its safety?
Marian Vickers, Convenor DES Action Australia