Generation Rescue provides autism treatment support through its Rescue Angels program.
Rescue Angels are parents of children with an autism spectrum disorder who have seen significant improvement or loss of diagnosis through the use of biomedical intervention.
Our Rescue Angels donate their time to answer questions, give guidance and provide resources for families starting out on their biomedical journey.
If you are looking to find a Rescue Angel, you can register to search for the mentor best suited for your family.
Please note that Rescue Angelsare not medical doctors. They are mentors who donate their time to helping families in need by sharing their experiences. If you have specific questions about your child’s health, please reach out to a qualified healthcare professional.
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Bobbi Walton 312-421-6132 bwalton@allimax.us
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You never know how strong you are, until being strong is the only choice you have.
By Becky Goins, from Harrison, Tennessee
I wish our family had never heard the word Gardasil. I had no idea a ‘simple’ vaccine could take so much from my daughter. We have spent years trying to help her regain some semblance of her normal life.
My Gardasil Nightmare
My Gardasil Nightmare
Savannah was always energetic and outgoing. She was happy, positive and loved being with her family and friends. She was very athletic with soccer being her sport of choice. She won many awards for the talent she exhibited on the field. Savannah lived and breathed soccer; it was her passion. We spent much of our time at games and tournaments. She had big dreams of one day earning a soccer scholarship and going to college. Savannah had many friends. Her weekends were usually booked with sleepovers, movies, shopping and other activities. She was leading a normal, happy teenage life.
May 2009: Savannah received the vaccines she needed for the seventh grade. She received the Gardasil vaccine, 2 other vaccines, and the flu mist. I was very nervous about her receiving the Gardasil vaccine since it was so new. I didn’t worry so much about the other vaccines since she had been given these vaccines before.
In the following weeks and months Savannah was sick with nausea, vomiting, and weakness. I remember it vividly because it always seemed to come on when she was active and it would hit her very suddenly. I remember several soccer games where this happened. I just figured she had the flu or a virus and didn’t think much about it.
I still had doubts about Gardasil though, so I didn’t rush to get the next dose. I even thought about not getting it at all. I had not heard about the adverse reactions some girls were having after this vaccine. It was just that Gardasil was still so new and enough time had not passed to really see what side effects it could have. I decided to wait awhile before getting the next dose.
October 2011: Savannah received the 2nd Gardasil shot. I had not heard anything about bad/adverse reactions to the vaccine so I decided to finish the series. I wish I had done more research. The only information I had seen was from Merck and it showed the shot was safe with the exception of a few minor side effects.
After Savannah received the 2nd dose of Gardasil everything in her life changed. Within one week she was very sick. We started seeing her primary care physician. She was experiencing nausea, vomiting, sensitivity to light, extreme migraine headaches, back and leg pains/spasms that would cause her to yell out for me in the middle of the night, weakness, extreme fatigue, dizziness, forgetfulness, irritability. What was happening to my daughter?
I slept with her many nights so I would be close when she needed me to massage her leg and back, assist when the nausea and vomiting hit, help comfort during an excruciating headache or just be there to reassure her she would be okay. She was so sick. Some nights I would lie awake and watch her breathing. What was happening?
On the few occasions she did sleep she was always restless. In the first several weeks of this sickness she could sleep 15 or more hours a day easily. As the sickness progressed she couldn’t sleep at all. She tossed and turned and wanted so badly to sleep so the pain would be eased and sickness forgotten but sleep just would not come. It seemed everything she ate made her sick. She was getting worse and worse. I wasn’t sure what to do.
During this time I began to put together a timeline to try to figure out what was happening. We also began seeing various doctors to try to figure out what was wrong. Savannah’s Gardasil Timeline:
October 2011: 2nd Gardasil vaccine given at health department. Within 1 week, she started becoming nauseous, vomiting, tired, headaches, and started missing many days of school and soccer practice and soccer games.
There were a few times Savannah attempted to play soccer. She was literally crawling on the field. Her coach pulled her out. She had always played in the past and had always played the whole game. This was devastating to Savannah and upset her more than anything. Soccer was the love of her life. Her coach was very supportive of her during this time but he knew Savannah would literally push herself until she was even sicker. This coach is one of the biggest supporters Savannah had. He was one person who saw with his own eyes the devastating changes in Savannah and her health.
It was heartbreaking. Not being able to play soccer was the hardest reality Savannah had to deal with during this time. There were many tears.
January 2012: Physical at health department. Very sick with nausea, vomiting, tiredness, fatigue, body spasms. Still missing many school days.
Appointment with primary care physician for nausea, vomiting, tiredness, fatigue. He makes a diagnosis of “possibly stress related”.
Savannah is missing several days of school or the school is calling for me to pick her up due to sickness several times per week. We are struggling to meet the absenteeism policy, she is sick every day. We need doctor’s excuses but I can’t take her to the doctor every single day to get them. If the school nurse calls it’s excused so many days I have to take Savannah to school even though she feels very bad only for the nurse to call me to come right back and pick her up. This is affecting my job tremendously too. It’s such a stressful time for me and Savannah.
We finally talk to the primary care physician, who requests homebound instruction for Savannah for one month.
May 2012: Last visit at the health department. They will not see Savannah anymore due to her sickness but ask her if she wants to get her 3rd Gardasil vaccine dose at her last visit.
She says, “No, I feel too bad.”
(This is a moment that plays over and over in my head. What if Savannah had gotten that third dose?)
Appointment with primary care physician. Savannah is sick every day with nausea, vomiting, fatigue, spasms, light sensitivity, and often has migraines. Doctor makes another diagnosis of stress. Prescribes Phenergan.
June 2012: Appointment with a different primary care physician. Savannah is very sick while at this appointment, vomiting aggressively, feeling extremely bad. Has to take Zofran given by the doctor to get through the doctor appt. We tell her we have been dealing with this for 8 months. Primary care physician refers Savannah to GI Specialist and prescribes Zofran. She promises us she will figure out what is wrong.
Savannah takes the Zofran every morning and sometimes in the afternoon. She still has stomach pains, she is fatigued, sensitive to light, sweats a lot and easily. We have changed her diet, buying lots of organic fruits and vegetables, and other foods. She is drinking lots of water, V8, Gatorade. She’s still very sick. Not sure what to do. Zofran becomes ineffective the longer she takes it.
Initial visit with GI Specialist. He schedules endoscopy with 3 biopsies.
July 2012: Have endoscopy with 3 biopsies done. Results all normal. Doctor prescribes Pinactin to take every night.
Follow-up appt. with primary care physician. I speak with the doctor about a possible link between Gardasil and Savannah’s sickness.
She says, “I’m not sure, but you never know, it could be.”
She will do some research, call some people and get back to me. She doesn’t get back with me and when I ask her at our next visit she says she hasn’t had time.
August 2012 – July 2013: Savannah begins to see a naturopath/chiropractor. I was skeptical, but out of options. Many of the parents I had read about who were dealing with sick children after Gardasil had success with naturopathy. It was something I had not tried. When a friend gave me the name of a good naturopath and told me the doctor had helped her with many issues I decided to try it.
The naturopath gave Savannah blood tests to determine what her body was lacking. She saw him twice per week for 3 months, then once per week for 3 months, then once every 2 weeks for 3 months, then once a month for 3 months. He gave her P5P, Calcium, and Magnesium drops, adjusts her back/neck each time we go and does numerous muscle tests. The tests determine what her body has too much of, or needs more of.
Over the next year the doctor gives Savannah many types of supplements to help her with various issues. He starts her on a detox regimen and cold laser therapy treatments.
My skepticism slowly turns to hope. Savannah very gradually begins to improve and feel better. She starts having some really good days after 6 months of homeopathy treatment for the first time since her second shot of Gardasil in October 2011. She was still struggling in the mornings getting up and eating was hard for her but overall a huge improvement. She was regaining her energy and her overall appearance was better.
August 2012 – July 2013: We do continue to see the primary care physician too and she asks if the naturopath is helping to which I respond “More than anything else we have tried”. She says if it’s working keep doing it.
The nurse tells me she doesn’t know how Savannah manages being so sick, she says she would have a hard time managing it and would be extremely depressed. I tell her Savannah is a very strong girl.
July 2013: We are out of money for now, so we must discontinue the naturopath treatment. It’s expensive and insurance doesn’t pay for it. I’ve scraped the bottom and there is just no way to come up with the funds I need. This scares us.
Savannah takes what supplements she has left. She says she feels she is doing better except for feeling sick in the mornings as usual and stomach problems when she eats certain foods. She is still tired a lot, but can sleep in the mornings since she is doing on-line high school this year. She still has a hard time sleeping at night, has back/leg pains, major digestive issues but overall she has made some progress.
August 2013 – September 2013: Savannah is doing pretty well. She seems to have some energy. She is eating, not very much but some. She eats very small amounts several times per day. She said this works best for her. She drinks a lot of water. We buy organic meat, veggies, and fruits as often as we can.
Mornings are still hard; this is just to be expected in her life now. She has some bad days but more good than bad.
Savannah joins a recreational soccer league and attempts to play. She plays three games but just doesn’t have the energy to continue. The soccer activity seems to set her back a little bit. She was happy just to be on the field. She comes to the realization that she probably won’t be able to play soccer again. She is sad but still hopeful that one day she will play again.
October 2013: Savannah is becoming sick again with nausea and throwing up frequently. She is barely eating anything at all. She says she thinks she needs to go back to the naturopath. We will as soon as we can come up with the money.
I will start looking into ways to possibly get Savannah a diagnosis. Besides the naturopath I’m not sure what to do or where to go. I will make another appointment with her primary care physician.
I would like to take her somewhere that can diagnose her. Where would this be? Vanderbilt Hospital? Mayo Clinic? Do I need a referral? I’m not sure but I will find out. Summing up our Gardasil journey
This experience has been the most difficult thing Savannah and our family have ever had to face. Her childhood has faded into oblivion.
Savannah deals with long days of sickness and restless nights. She still has leg and back pain. She is sick every morning which is the hardest time of the day for her. We have adjusted her life to avoid mornings.
Public school was no longer an option; Savannah now participates in an on-line high school. It is the only way she will be able to finish. She makes good grades and is proud of herself, I’m proud of her too.
Savannah misses her school friends so much. Most of them don’t understand her sickness – why she has to come home early, cancel plans, or feels bad when she attempts to go somewhere. She tires quickly and becomes very irritated by loud sounds, bright lights, or busy, crowded activities.
I talked to Savannah about adjusting life when it’s necessary. She adjusted as best she could. She got a job at a burger restaurant. She works 2-3 days per week for 2-3 hours a night and is doing well. She has almost been fired since her supervisors do not understand her morning sickness and that she cannot work in the morning. Sometimes they schedule her for morning anyway. Savannah always tries to do it but she just can’t. Mornings are a big struggle for her.
Savannah has been so strong through all of this. I watch her closely because she doesn’t want to worry me and will try to keep things to herself even when she feels bad. I know if she says she’s not feeling well, she’s really feeling bad. She goes through her struggles quietly when she can. She is an inspiration to me.
Savannah has a favorite quote which is:
“You do not know how strong you are until being strong is the only choice you have.”
Savannah doesn’t talk about her sickness very much; she doesn’t want people to see her as being sick. She did write about it in a paper for her on-line high school. The paper was about the most influential person in her life. She wrote about me and this journey we have been through. It seems that is all there is at times but through it we have developed a strong bond that will never be broken. The paper is the first time Savannah has really expressed how she feels.
This is the battle Savannah and I have fought for two years. If I could take her pain and sickness upon myself, so she could be whole, I would. We won’t give up this fight and I’ll be by my daughter’s side and help her get through this.
I hope one day we find answers; I hope one day we find a cure.
Mom and daughter, your health travels are inspiring to us all. What a beautiful and touching story you weave even in the midst of such trying times.
Savannah the following song is a tribute to you. I think the trials that bring us to our knees are the ones that help us recognize the journey life is and give us a clearer perspective. I think health trials such as yours, try us to the core. I know God loves you and your family and will stay close.
The following musical duet was a surprise to me when I went to type this blog. I put in a disk, I have had for a little while, but had never heard through to the end. The c.d. has my favorite baritone, Bryn Tercel and to my surprise he is singing with Sissel, my favorite soprano, on this last song. Here were my two, favorite vocalists singing together.
As I listened through this heart-warming piece, I knew it was meant to send to you. Enjoy and God bless.
The observations of Karen Sullivan Sibert, MD a Los Angeles anesthesiologist, writer, and mother.
We guard the privacy of patients in my hospital zealously—we take care of a lot of celebrities since we’re right in the shadow of Beverly Hills. And of course we live in terror of HIPAA violations, those federally mandated HHS rules that protect individually identifiable healthcare information and could bring down “civil money penalties” upon us if we don’t keep our patients’ medical records strictly confidential.
But for healthcare workers—physicians, nurses, technicians, even medical supply vendors—in LA County, the usual privacy rules don’t apply any more. Now everybody gets to know at least some of our medical history: whether or not we’ve been vaccinated against influenza….
I had seen many Gardasil commercials on television and wanted to be ‘one less girl’ affected by cervical cancer. My doctor said I needed the HPV vaccine and I trusted the information I was given. I believed the vaccine was important for my health. I chose to get vaccinated.
I was not told that regular pap smears were an effective way to detect abnormal cells which could be treated before they developed into cervical cancer. I was not told the vast majority of HPV infections would clear up on their own with no health consequences. I was not given adequate information about the adverse reactions that could occur after Gardasil. I had never taken the time to research Gardasil, or any other vaccines. I believed vaccines were simply a part of the ‘healthcare’ system; a system I trusted.
I did not know vaccinating while your immune system was compromised could exacerbate the risks of adverse vaccine reactions. My doctors didn’t warn me. I wish I had known then what I know now.
My Health before Gardasil
I have been dealing with spinal issues and pain since I was a teenager. Nevertheless, I worked nearly full time at a physically demanding job and attended classes part time. In October of 2010, I had another injury that put me out of work. Because of this injury, I was prescribed heavy doses of muscle relaxers by my doctor. I had been taking those medications for six months. The muscle relaxers were causing gastrointestinal (GI) complications in my body, exacerbating GI issues I already had. So, I weaned myself off the medications a couple weeks before my upcoming OB/GYN checkup. I thought this appointment would be beneficial, and I was happy to be off the muscle relaxers two weeks prior. I was hoping to keep what small progress I had going.
My First Gardasil Injection
On January 29th, 2011, at 23 years old, I went for my Gynecological check-up with my fiancé to discuss birth control pills and the HPV vaccine. Trusting my doctor’s advice, I got my first injection of Gardasil that day.
Within the first few days and for the week after the Gardasil shot, I was bedridden, sick with what we thought was a bad flu. It was also possible I was having a reaction from the muscle relaxer withdrawal or the side effects of my newly prescribed birth control pills. I stopped taking the birth control pills after eight days and my symptoms worsened.
My mother and fiancé remember the physical changes when I wasn’t feeling well, but those few days after Gardasil have blurred together for me. I was so sick. During the days, weeks and months to come, I experienced the worst nausea, weakness, vomiting, and most severe pain in every crevice of my stomach and body that I have ever felt in my life. Even the other stomach sensitivities and spinal issues I had experienced previously absolutely paled in comparison to what happened to me after getting Gardasil.
The Doctors
We went to every doctor appointment and tested everything we possibly could. The tests kept coming back ‘normal’. (Ironically, they never tested for metal poisoning, which I expressed symptoms of. If any doctor would have known those symptoms, I had nearly all of them, perhaps I wouldn’t have suffered for so long.) None of the doctors said there could be any connection with Gardasil. In fact, most told us just the opposite; that my symptoms were definitely not caused by Gardasil. It was not until blood tests taken outside of my doctor’s office nine months later that we discovered the toxic stress, deadly amount of candida (yeast), metal poisoning and other toxins were filtering through my bloodstream. (Gardasil ingredients included; we finally connected it with certainty here after finally doing research online. We were overwhelmed with the side effects we read about, especially how similar other girls’ adverse reactions were in comparison to my own. ) Within a month of my only Gardasil vaccine I was a completely changed, debilitated human being.
The Pain and Nausea
During this period of many months, for twenty four hours a day, every moment of my life, I was nauseas, sick to my stomach and alternating puking. I could not drink water or eat anything without getting sick. Digesting anything was extremely painful and my stomach and body hurt excruciatingly. This was more pain and ongoing debilitating symptoms than I have ever experienced. It hurt and was very difficult to move, to walk or to do anything I could not even wear jeans around my waist for seven months because of how painful my stomach felt. I discovered new levels of dizziness and came close to passing out many times upon standing. I was losing weight rapidly, up to 15 pounds a month, with limited activity.
Gardasil: Before and After
Left: me in December 2010, one month before Gardasil. Right: a year and a half later, July 2012 after the extreme weight loss post Gardasil.
I tried to focus and meditate healing into my body to counteract what was happening. I lost 100 pounds within that first year and a half. My diastolic blood pressure dropped to the 50′s/40′s. It used to be consistently around 120′s/60-70′s. My hair fell out at the rate of my weight loss – quickly.
My tongue turned a grey black color in the center; my eyes turned a slight yellow. The acupuncturist, whom I was seeing before Gardasil, was documenting my progressive decline in health throughout these early months after my injection. My liver, spleen, kidneys, gallbladder, pancreas, and intestines were not functioning properly and under severe stress.
I went to the hospital once for the pain in my right side and stomach, and was given morphine, pain pills and sent home without an answer.
The most challenging and embarrassing issues were the gastrointestinal problems, which were horrifying on their own. Every time I had to use the restroom, it made me more ill than I already felt. The pain I experienced is something I will never forget. The pain in my stomach and body was disorientating every day. It physically hurt everywhere, my brain, mind and body felt foggy and deprived of energy and focus. I struggled to focus, verbalize my feelings, anxiety or frustrations because I felt so toxic and constantly overwhelmed within my own body. I was in more pain, more exhausted and more fatigued than I had ever felt. It was often overwhelming, especially trying to sleep with comfort or ease.
Meanwhile through all of this, I was told by my doctors that I had Irritable Bowel Syndrome (IBS) and to go on a whole grain diet. That was the only advice they had for us, after all my symptoms, IBS. We knew we needed other help and resources.
Family Support
My family focused all of their efforts on helping me any way they could. I was already seeing an acupuncturist outside of my insurance every week and she was documenting my progressing issues as time went on.
We bought vitamins, herbs, protein powders, digestive enzymes, probiotics, and fiber supplements to treat IBS issues. We began the first of many dramatic diet changes to facilitate gut healing.
After months of using these products, they were helping on a small scale by not making things feel worse, with some slight benefits. The nausea and pain were still constant. My back and whole body were amongst the most excruciating pains and because of the pain, my mobility, energy and strength were limited.
As the months went by, I became further immobilized. I walked as much as I was able. I tried swimming during the summer, but it exacerbated my pain greatly. My physical therapist told me, “This was as good as I was going to get.”
We decided to go somewhere else after that.
Out of Desperation
We were at our tip of desperation after I returned from a two day trip with my fiancé. We went out of town to see friends. It was traveling, something I hadn’t done during this year of many changes. We were trying to make it work even with my health complications.
It was wonderful seeing my friends, but my body could not recover from exhaustion after returning. We sought additional help.
The physicians we saw during this time had not helped, many would not help and denied my symptoms. It was my acupuncturist, who stuck with us and tried to heal me. She gave me the name of a chiropractor in the area.
It was worth a try.
Chiropractic Health
One of our biggest blessings through this chaos was finding chiropractic care and meeting my chiropractor, Dr. McKillican. He recognized the crisis my health and nervous system were in and was the first sincere and genuine doctor that strived to help us.
A chiropractor was not on any of my insurance or among the recommendations suggested to me, ever. In fact, I was advised to stay away from them earlier in life. The fifteen minute drive to their office, walking in and sitting down was excruciating, and with how my insides felt, I was deteriorating every day. We knew there, though, we had found a life-long missing link for health and healing. The adjustments I have had and which I am still continuing to have, have improved my health and lifestyle enormously.
I know with my whole being that chiropractic saved my life, especially during this crucial time of debilitating disease and sickness. I have been getting weekly adjustments for nearly two years, beginning seven months after getting Gardasil. Chiropractic adjustments have made significant and dramatic improvements in healing and strengthening my nervous system and body. Regular adjustments work on our nervous system to remove nerve interference within us and to promote the body’s natural ability to heal itself.
Vital Hematology and Nutrition
Nine months after Gardasil, I worked with a vital hematologist to detoxify my body naturally. We used a focused diet that included: juicing specific veggies, fruits, herbs, multiple vitamins, digestive enzymes, colloidal silver, olive leaf extract, glutathione, aloe vera juice. This regime greatly helped with my unbearable, chronic nausea. It seems to have reduced the intensity of pain throughout my stomach. I have had significant improvements in GI health.
This past year and a half I also began working with a nutritionist to deal with the continuous mending needed to repair my GI and organ issues, adrenal dysfunction, low energy levels and fluctuations, memory, brain, cranial issues, appetite/food challenges and over all internal damages.
I am thankful beyond words for the healing I have experienced, despite the pain and many challenges I have faced post Gardasil. My body is mending at the rate it can handle. I use my energy to focus on this.
Two and a Half Years Post Gardasil
The issues I am still working on healing and mending are different two and half years after Gardasil. Now, I primarily deal with the autoimmunity changes and pain levels. These include: gastrointestinal issues, body pain, appetite dysregulation and the ability to eat enough, malabsorption of nutrients, low blood pressure and dizziness, energy, a strong sensitivity to cold temperature, smells and chemicals.
Food and my appetite can be very overwhelming sometimes. It used to bring me to tears every day, especially my lack of desire to eat. I often don’t have the desire to eat or I get full too quickly. I also get really hungry all at once, often unexpectedly and painfully. The food and appetite issues are a constant work in progress that are still very complex.
They have become somewhat easier to work with now than in the years before. I find focusing on ratios of carbs, fats and protein I need helps me, especially with my energy fluctuations. I have also eliminated foods with gluten, GMO or that are processed. I can no longer eat foods that are spicy or acidic. I eat raw organic veggies only – juiced because my GI tract cannot tolerate the un-juiced vegetables. I watch my sugar intake, including many fruits, and other foods that I am sensitive to. I eat whole foods, organic vegetables and fruits, good fats (grass fed/organic butter and coconut oil have helped immensely here) and as much healthy, grass fed, organic protein and protein shakes as my body needs to be balanced. All this has helped substantially.
My healthy lifestyle is vital to keep my progress going. There is a combined effort of balanced nutrition, vitamins, medicinal herbs, supplements, regular chiropractic adjustments, lymphatic massages, physical therapy, removing as many toxins from my environment, and adding as much movement, exercise, walking or stretching as I can.
I also use coffee enemas and drink alkalized water (and lots of it). My body now seems to be on the path it needs to recover from the atrocity that Gardasil caused.
Every day is different with pain and energy levels, but I focus on the blessings, because I know how much worse it can be. I live in chronic daily pain, with pain levels, exhaustion and auto immune changes I never experienced before Gardasil, but these experiences have humbled me deeply in life and in the lives of my loved ones.
The Support of My Family
It has taken a substantial amount of money, time and sacrifices from my extraordinary mother and fiancé to care for me post Gardasil. They help me daily with everything, especially during times when more help is physically needed. Without them, none of this progress could have been possible. I am more grateful and humbled than ever to be alive and for all the amazing, most abundant love and support of people I’m blessed to share my life with. I could not have come this far without these wonderful people.
Gardasil changed my health, my life, and family’s lives forever; physically, mentally, emotionally, and financially.
We have had to educate ourselves about health in ways we never did before. I have a humbled appreciation to be alive after how ill I was nearly three years ago. We have learned to educate, read, and research what we put into our bodies.
We encourage everyone we know to do their own research on everything that is put into their body, especially through injection. The HPV vaccine adverse reactions will not stop until these vaccines do.
What I can give and share with others through this experience is the truth, my experiences, and the real facts and statistics regarding Gardasil. I plan to do this until this vaccine exists no more.
Thank you Nicole for your example of perseverance, humility and perspective. I hope your story travels far and many others receive your knowledge and insight. You have inspired me with your triumphant spirit. Here’s a little song of how I envision your influence on others. Thank you for your strength.
The SaneVax team is pleased to announce an opportunity for Gardasil and Cervarix HPV vaccine recipients and their families to help provide data regarding HPV vaccines’ risk versus benefit profile. The study is being conducted by an independent scientist, Dr. Chandler Marrs, and hosted on her website, Hormones Matter TM. The purpose of this study is to delineate the range, frequency and severity of adverse events as well as determine which, if any pre-existing conditions predispose one to adverse reactions. As now the vaccine has been on the market for several years, the study also looks at the longer-term side-effects and adverse events.
Whether your experience with Gardasil or Cervarix has been good, bad, or ugly, the SaneVax team encourages you to take a few minutes to complete the Gardasil Cervarix HPV Vaccine Survey. Please, help provide the information people need in order to make an informed choice when it comes to HPV vaccines. Help provide accurate data to those medical professionals who prescribe HPV vaccines.
Hormones MatterTM is a health education and direct-to-patient research community, committed to giving women the information they need to make informed medical decisions. The Gardasil Cervarix HPV Vaccine Survey is the third, in what Dr. Marrs hopes will be a long line of research projects tackling the underserved areas of women’s health. As Dr. Marrs tells her story:
I am an independent scientist, a fierce women’s health advocate and a mom. I have background in women’s health research, specifically the role of hormones in various conditions. My passions are research, diagnostics and health education. Over the last year, I developed a health site called Hormones Matter. There we cover all-manner of health related topics, even a little health policy, politics and humor. We are totally unfunded and operate purely on the passion of volunteers. I also have a company called Lucine Biotech and an organization called Lucine Women, currently unfunded as well, that will one-day offer lab based research opportunities and develop diagnostics in critical areas of women’s health.
Undeterred by the lack of funding, I decided that I would no longer wait for funding to conduct the research that needed to be completed. It was time to bring more data into the field of women’s health. About three months ago, I began conducting online research. I began with an oral contraceptives study looking at the off-label uses of oral contraceptives, along with side-effects and adverse events associated with the different formulations/brands. Phase 1 of the Oral Contraceptives Survey has over 600 respondents. The next study launched was the Hysterectomy Survey, and it has over 200 respondents so far. Last week, we launched our Gardasil Cervarix HPV Vaccine Survey. My plan is to tackle critical and ignored areas of women’s health care, one survey at a time.
As an unfunded, independent researcher, I am crowdsourcing the data collection. I rely heavily on social media and community advocates and organizations to spread the word. As a strong believer in listening to patients, I also rely heavily on the broader patient communities to inform the direction and design of the research and the even topics we cover on Hormones MatterTM. Do not hesitate to email questions, concerns, suggestions and ideas: info@hormonesmatter.com
All surveys are anonymous. They are hosted on a secure cloud site (Survey Monkey). The data reports from these surveys will be published and available to women and their physicians.
I want to thank SaneVax for supporting these efforts and to personally thank all of the survey respondents who take the time to complete this survey. Together we can improve women’s healthcare, one data point at a time. Thank you.
