By Glenda Smith
I was reluctant to grant permission for Angela to take the HPV vaccine in the fall of 2010. I remember thinking my daughter doesn’t need this, BUT maybe I’m not being a responsible mom if I don’t get it for her. According to the information I was given, the only risk was if you had a ‘severe immune disease e.g. HIV.’ I knew Angie had some chronic fatigue and celiac, but it said “SEVERE” and “HIV” – those are STRONG words that didn’t seem to fit Angela.
So, trusting what I know now to be a vague and ‘ill-informed’ piece of paper, I signed and she began her shots.
April 14, 2011, Angie was 13 years old and in grade 8 when she received her last dose of HPV vaccine.
April 15, 2011, Angela called me at work feeling ill, nauseous, and dizzy and in severe abdominal pain. We thought she had eaten some wheat, but we checked everything. The pain never went away! It only got worse when she ate. She cried and cried in pain.
Angela never made it to her 8th grade graduation trip. For that matter, due to extreme weakness, severe abdominal pain, nausea and dizziness, she missed the last three months of grade 8. Trips to the family dr. and blood work accomplished nothing, not even an avenue that looked at her last immunization. An endoscopy even revealed her celiac under control. Over the summer pediatrician put her through test after test revealing nothing, yet her symptoms persisted. Pediatrician began to doubt Angela’s sincerity and eventually wanted her to be seen by a psychiatric clinic in the city. There was no way we going to put her through that. Angela was a stable, determined, and faithfully patient young girl.
It wasn’t until I reported her side effects to the local health unit I found out the HPV shot was Gardasil. It was only after I reported adverse reactions that the local health unit directed me to the manufacturer’s website and Merck’s product monograph. I was appalled at the very long list of side effects worded much differently than the information I had been given. It included phrases like a ‘weakened immune system’ as one of the risks. At the bottom of the list it stated “this is not a complete list of side effects.” Had I been given an opportunity to read this ahead of time, I would have never agreed to Angela receiving Gardasil at all.
I quickly asked our local health unit why this was not a part of the information we received along with the permission form. They simply replied, “We are not required to.” A little research and a quick look under Canada’s Health Act shows that indeed they are required to provide all risks, benefits and adverse side effects no matter how minor OR severe. In addition, they are required to provide alternative treatment options – which I now know to be simple regular pap tests. It was obvious that this whole HPV vaccine process was a manipulation tactic.
When 14 years old, Angela began going to Toronto’s world renowned Hospital for Sick Children’s GI department and various specialists. More and more blood work, procedures, MRE, stomach emptying test, and the list goes on. Yet another endoscopy and colonoscopy revealed inflammation here and there. “Cause unknown… Let’s just treat it,” was the approach. So she is put on medication after medication – dealing with side effects and no improvement.
Grade 9 begins and Angela miraculously makes it through about 6 weeks, attending school maybe 3 times per week. Then it was all too much and she just crashed – not able to even get out of bed for days at a time. More blood work. Still nothing shows up. Instead of earning 8 credits and enjoying a new life in high school, we had to plead over and over to get her home instruction, and that was for only 2 credits!! By now, things are taking an emotional toll on her (and I) as well as physical.
Angela has jumped through hoops for doctors who say this and that. She exhausts herself trying to do as she is told by them. Now just over two years later, she has basically NO trust in doctors.
January 2012, the abdominal pain seemed to be masked by extreme ‘roll around the floor crying’, bloating! This went on for months. She was admitted to our sick kids’ hospital April 30, 2012 for 2 weeks, put on an NG tube (tube through the nose to the stomach) and fed Tolerex, a nutritional formula. She was not allowed ANY food or drink this whole time! Right off the bat it made her feel worse and the bloating worse, but despite her crying and crying, they pushed to keep her on it. The 2 most upsetting weeks she will ever remember!
And then, it was almost a week at home on it before we said, NO MORE! As it turns out now, we find she is VERY sensitive to carbohydrates, and the first ingredient in the Tolerex was potatoes starch. More suffering for nothing…
Angela is almost 16 years old now. Doctors are now considering Gardasil as a possible cause for her mysterious auto-immune condition(s), but only at our urging with us providing scientific evidence to back up our statements. She attends grade 10 only 2½ hrs per day, 3 or 4 times a week if she is lucky. When will she ever be able to catch up in school and regain her life???
Angela has a GI specialist and nurse, a pain clinic team, an adolescent teen nurse practitioner and psychologist, and is part of the Seattle Children’s hospital online study helping teens live with chronic pain. Angela has two naturopathic doctors, a nutritionist, and sees a medical doctor who runs a naturopathic clinic. She has tried vitamin/mineral IV treatments, is expected to take over 20 supplements a day, which make her gag and has changed very little for her, her diet is very limited. She is able to eat very little without increasing pain and bloating from the level she constantly lives with, and is still trying acupuncture. She is exhausted with always ‘trying’ one thing after another having nothing alleviate her symptoms.
Before Gardasil, she had her celiac completely under control, and despite living with some chronic fatigue, she made basketball teams at school, volleyball teams, took trampoline, gymnastics and enjoyed horseback riding and hanging out with friends and was an ‘A’ student at school. Her one ambition and excitement was to try out for the high school basketball team; an ambition she never got to pursue.
Now, only being able do ‘light’ activity 2-3 hours per day, none of these sports are realistic. If Angela pushes herself one day, it will take 3 in bed just to return to her ‘already’ weak self. Over the past two years she has seen friends very little because she can’t keep up with their energy and usually feels unwell. We have to specifically schedule limited social times or activity for her, and pick and choose how she will spend her valuable limited functioning time each day.
What plans for the future can she make like this? There is no cure. She often cries about missing out on the active things she once so enjoyed. It hurts when she sees her friends moving on and doing things that she cannot, like part-time jobs. Instead she lives every day with two, three or all of the following debilitating symptoms:
- abdominal pain (1st thing she had, severe, worse after eating)
- severe bloating (bloating is constant, and just worse after eating as well)
- being extremely limited in what she can eat, not eating things she used to love
- chronic digestive inflammation
- weak, muscle weakness (feels like going to collapse, hard to hold herself up)
- severe fatigue/tiredness
- unrefreshed by sleep
- ear pain (when really tired and more run down then usual)
- feels like she should be shaking
- unexplained rashes (over sensitivity to things like outdoors, lake water, certain clothes)
- unexplained itchiness
- sharp pain down the side (hurts to move or breathe)
- no energy, and if out and about more then 2-3hrs of simple activity per day, bed ridden for up to 3 days to return to ‘normal’ tired self
- uncontrollable temperature variations; ‘hot’ or ‘really hot’ in an otherwise cool room (fan always on)
- loss of good focus and concentration she once had (i.e. school work now difficult or sometimes impossible to complete)
We are scared. We have no idea when, or if, this will ever end. We have no idea whether any of us will ever be able to regain a ‘normal’ life.
I left my job only months after she got sick. Taking care of Angela physically as well as emotionally as a result of taking this vaccine IS my full time job. Our naturopathic doctor and a clinical nutritionist are who help us the most and who Angela feels most cared for by. We have incurred the cost of me not being able to work, in addition to the extra costs of healthy foods and supplements.
Angela is by ‘far’ not alone. She is on a private support group page with over 70 girls from all over the world which helps her tremendously. I am on with well over 1000 parents (more being added every day), all with children who are suffering similar or worse adverse effects, and these are just the ones who have found their way to a support group.
Although Angela suffers a great deal, we are still grateful as there are some girls who still have seizures after 5 years, some paralysis or neurological impairment, and there are those girls who have paid the ultimate price with their lives. There are still many out there who are not even aware that Gardasil may have caused symptoms they are living with. The adverse effects of Gardasil in the research and the evidence against the vaccine are staggering!
Had I researched then and found what I know now, we would have a healthy young teenager living a normal teenage life as was her right.
We share her story hoping to prevent this from happening to another family and to offer support to those it has already happened to. It is the only way to help Angela feel her suffering is not in vain. Keeping faith holds us strong.
Our message is simply this: “Investigate before you Inoculate!”