Mother tells of daughter’s debilitating illness as Ham&High investigates HPV vaccine safety
“The government needs to recognise these side effects, support these girls and help them get better. How many need to become unwell before somebody notices?”
These are the words of East Finchley mother Naomi as she describes the devastating impact of a debilitating and disabling health condition called PoTS on her teenage daughter Daisy’s life.
Like millions of girls, Daisy had the Human Papilloma Virus (HPV) vaccination to prevent cervical cancer when she was 12 in 2010, her mother believing this was the best way to protect her wellbeing.
“I’ve always been pro-vaccination, so when the letter came from school I didn’t think twice about giving my consent because I believed it would prevent my daughter developing cervical cancer,” said Naomi, whose name we have changed.
The vaccine has been described by one immunisation expert as “probably the most important thing ever done” to protect women’s health and is predicated to prevent up to 400 deaths a year from cervical cancer.
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But immediately after having the first jab at school, Daisy began suffering headaches, dizziness, nausea, aching limbs and feeling tired. Her health problems spiralled after the second dose and by Christmas she had extreme fatigue and piercing headaches so severe her parents feared she had a brain tumour.
Daisy was initially diagnosed with ME and Chronic Fatigue Syndrome, and then with Postural Tachycardia Syndrome (PoTS).
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This is a disorder of the nervous system that causes abnormal increases in heart rate and, in its severest form, can leave sufferers bed-bound or in a wheelchair.
“The effect on her has been devastating,” said Naomi. “Before the vaccine she was sporty, played netball, was a fast runner, a very fast swimmer and was academically able and enjoying school.
“She’s had a huge amount of time off school and in her GCSE year we had to tutor her at home because her illness had become even more debilitating. She currently struggles to attend school at all.
“It’s stolen her teenage years from her and she often says it feels like she is trapped from really being herself. She hasn’t had a normal teenage life, playing sports, going out with friends or going to parties.
“Obviously that’s incredibly sad for us to see. In general people do not understand how disabling this illness is.”
Other mothers also believe their daughters’ health has been harmed by the HPV vaccine.
Yet government health agencies insist it is safe and fear the clamour will affect the vaccine’s high uptake rate of 90 per cent and needlessly place the future health of young women at risk.
The vaccine was introduced in the UK in 2008 for girls aged 12 to 13 and has been given to more than eight million teenagers.
The government’s Joint Committee on Vaccination and Immunisation (JCVI), which advises UK health departments on immunisation programmes, says its safety is not in question.
Prof Andrew Pollard, committee chair, said: “We have no evidence of a safety signal with the vaccine.
“But what we do have is very clear evidence that this year 900 women, who have not received the vaccine, will die of cervical cancer, and the vaccine has the potential to prevent such deaths in future generations.
“So the place of this vaccine in defending women’s health is probably the most important thing we have ever done.”
Figures from the Medicines and Healthcare Products Regulatory Agency (MHRA), the government body that monitors vaccine safety, show 8,228 adverse drug reaction reports to the HPV vaccine since it was introduced, or one in 1,000 vaccinated girls.
Of these 2,587 are classified as “serious” by the clinician logging the report.
The MHRA acknowledges the figures are high compared to other vaccination programmes, but says this is explained by the high number of doses given over the last eight years, the age of the girls who are old enough to voice concerns, and the fact that the vaccine is given as two and previously three separate jabs.
A MHRA spokeswoman said: “The larger overall number of reports for the HPV vaccine compared to other vaccines gives no cause for concern.
“The overwhelming majority of these reports relate to known side effects that are usually mild, transient and common for most types of vaccine given to adolescents and adults - for example sore arms, redness and swelling at the site of the infection, headaches and tiredness.
“These figures cannot be used to compare the safety of different vaccines.”
In July the European Medicines Agency (EMA) launched a review to look at “rare reports” of PoTS and Complex Regional Pain Syndrome (CRPS) in girls who have received the HPV vaccine after Denmark flagged up safety concerns.
Naomi is one of a group of parents who will gather data and UK case studies to submit to the EMA and she has called for the government to make parents aware of the review.
“With the current round of vaccinations going out now in schools, parents really should be told that there’s a safety investigation being conducted by the EMA in order to be able to give an informed consent,” she said.
Campaigners and doctors argue part of the problem is very little is known about PoTS and the condition often takes a long time to diagnose.
PoTS specialist and consultant cardiologist Dr Nicholas Gall sees about 20 girls a week with the condition and says there has been a “failure in medicine” to take PoTS symptoms in young women seriously with many simply referred to a psychiatrist.
Only a tiny handful of patients mention a link with the HPV vaccine but Dr Gall believes it possibly could be a trigger for PoTS in some very rare cases, as many patients talk of something “setting off” the illness such as glandular fever, a car crash, an anaesthetic or operation.
“I suspect if we understood the condition in any way we would say that in some people the HPV vaccine is the bit that sets it off,” he said.
“But there isn’t really any data one way or the other and we should be doing more research about PoTS full stop, it’s an enormous public health issue that is generally ignored.”
The Association for HPV Vaccine Injured Daughters (AHVID), formed in January this year to raise awareness of the number of girls suffering illness following the vaccine, has called for further research.
Founder member Caron Ryalls, 50, said many of the large scale clinical studies only include data on hospital-confirmed diagnoses made within 180 days of vaccination whereas PoTS often takes years to diagnose.
The association has called for research to track “symptom clusters” following the HPV vaccine rather than confirmed diagnoses to recognise the many girls with similar illnesses.
“The MHRA will obviously maintain that the benefits of the vaccine far exceed the risks,” said Mrs Ryalls. “We don’t agree with that. We think the benefits are over-stated and the risks under-estimated. Parents do have quite a lot to worry about because they’re not given the full facts.”
* If you need support, or would like your case included in information sent to the EMA, contact AHVID chair Freda Birrell on firstname.lastname@example.org or 07752 945 545, or AHVID secretary Caron Ryalls on email@example.com or 07885 422 690.
* For more information about the HPV vaccine, go to the NHS Choices website.