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Families Use Social Media To Respond To Gardasil Side Effects

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When I originally named the final installment in the Empowher Gardasil series, the title was "A Mother Speaks Out." Yet, I found that that one woman's story was reflected in the journeys of parents around the world who were searching to understand why their daughters had become mysteriously ill. A series of circumstances seemed to be replicating, and the Gardasil vaccine kept popping up as a common denominator.

As parents sought to navigate a situation where their healthy daughters had become sick and, in the worse case scenario - died, they turned to the Internet for answers. Scouring the web for information, checking message boards and chat rooms, they found out that their predicament was not isolated. They reached out to others; harnessed the power of social media; created support systems and advocacy networks. They began to build a grassroots movement to square off against Merck & Co., the producer of Gardasil. Most importantly, for families who were at the start of an overwhelming and arduous process, they found a space to enter which had been constructed by those who had been there before them.

In 2009, Rosemary Mathis and Marian Green started the website TheTruthAboutGardasil. It comes up in a Google search for Gardasil second, directly underneath the Gardasil website. With a play on Merck's advertising pitch, their tagline is "I don't want to be 'One Less.' Investigate before you vaccinate." I spoke with both women in a joint interview by telephone. They explained their struggles to understand why their daughters' health had become impaired.

Lauren, Mathis' 12 year-old, had been told by her pediatrician that the Gardasil vaccine was "the best thing for her." The first shot left Lauren with nausea and headaches. She had the same symptoms three to four weeks after her second shot, and was advised that she had a "virus." The third shot, which Lauren received in mid-August of 2008, disabled her. By September 4th, she had pains in her legs and side. A series of hospital visits determined that her gall bladder was only functioning at 7 percent of its capability. Wake Forest University Baptist Medical Center found that her gall bladder was, in fact, healthy - but that something else was going on. Massive doses of antibiotics helped, but Lauren was put on a modified school schedule.

At Duke University Hospital, a doctor who was slated to retire in four weeks told Mathis that her daughter had "vaccine injuries," and prescribed medication for the ulcers in her stomach. In February of 2009, after six months of medical visits, Mathis filed a report with VAERS. Lauren missed 100 days of school. Mathis told me, "I honestly did not know if that child was going to live or die." She continued, "She is still disabled, because she had to redo her modified school schedule this year. She is still not able to attend school on a normal basis without a lot of absences."

Marian Greene feels that her 16-year-old daughter, Holly, was pushed to get the vaccine. An athletic girl and top runner who was being recruited by colleges, Holly had recently lost a coach and a grandfather to cancer. This predisposed her to seek protection by getting the "cervical cancer" vaccine. Holly got her first dose of Gardasil on a Thursday, and on Saturday had what she thought was an allergy attack. Sunday, she had problems breathing and took her asthma medication. The following Monday, she had severe chest pains and could not breathe. Her pallor was grey. Over nine days she repeatedly visited the emergency room, telling her mother that her "chest hurt so badly it felt like someone was ripping her heart out." She had pericarditis, a swelling and inflammation that surrounds the heart with fluid. The doctor said it was directly caused by Gardasil, and wrote that in his report. Holly now has a team of five doctors she is working with: a cardiologist, a rheumatologist, an allergist/immunologist, a naturopath, and a pediatrician.

Mathis questions the role of pediatricians who promote Gardasil as a vaccine to prevent cervical cancer, without a complete enough disclosure and informed consent process. She e-mailed me a letter from Lauren's doctor who expressed his concern, while admitting that he was not convinced of the link to Gardasil. He wrote,

As you know, however, I am not convinced that Gardisil is the root cause of the problem. I say this not because I trust Merck, because I don't fully trust any of the drug companies. But I do trust the CDC, as well as the American Academy of Pediatrics and the ACIP, who thoroughly review the vaccine research and make recommendations to the CDC. That being said, I know that new info always can show up later, so I just plan on keeping an open mind about this vaccine, like I try to do with all of the various medicines and treatments. However, I rely on the experts, and at this time they still recommend giving the vaccine.

Green noted that in her experience with doctors in the hospital setting, there is an acknowledgement of a potential Gardasil and illness relationship. However, most of these doctors are being told by the legal departments of their institutions not to speak out publicly.

As Mathis elucidated, "You are on your own when this happens. The Internet has been a lifeline." So their site has been set up to centralize and store information, create easy reference links, sign a petition, make connections with "Guardian Angels," and to contextualize the 50 deaths that have occurred post-vaccine. Mathis explains, "It helps Moms just coming into the process." Their site's outreach is international. The countries that appear on their hits stats include Israel, the Netherlands, Australia, New Zealand, Greece, Canada, the United Kingdom, Singapore, India, Belgium, Spain, Germany, Italy, Mexico, and Scotland.

Jodi Speakman, the administrator of the Facebook group, "Stop Gardasil! Victoria's Story," spoke to me about the power of her Facebook connections. She is currently working to promote awareness of the potential side effects of Gardasil, and the issue of informed consent. "I've never had a problem with vaccines," she stated flatly. "If I could vaccinate my children against anything, I would." However, her point of view changed when two and a half weeks after her daughter Victoria received the Gardasil shot, she began having seizures and full body tremors. She was advised at Jeanes Hospital in Philadelphia that her daughter was having an "allergic reaction to something." It didn't occur to her to mention the vaccine. As Victoria's symptoms grew worse, she missed her entire senior year of high school. "All of her friends have graduated and gone to college," Speakman said. Now her goal, as she described it, "is to get help for our daughters, as we have been abandoned by the medical establishment." She has contacted her state representatives, but was disappointed when all she received was "form letters in return."

Others are reaching out to officials as well. Karen Maynor, a New Mexico mother whose 20-year-old daughter Megan died in November 2008, wrote a four-page letter to Dr. Margaret Hamburg, the Commissioner of the FDA. She expressed her belief in the "common link" between the young girls who have died and Gardasil. Her frustration is palpable in her statement, "No one seems to care." Points in her correspondence included a call for tests on autoimmune disease genetics before Gardasil is administered; the inefficiency of VAERS to track adverse reactions; lack of doctor knowledge about VAERS protocol and informed consent; the explanation of the full range of side effects. The letter was sent by e-mail and postal mail to a slew of high-level people including Michelle Obama, Hillary Clinton, Maria Shriver, and Sen. Kay Bailey Hutchinson (R-TX). Maynor wrote, "Someone has to take responsibility to initiate an immediate investigation into why these deaths and illnesses occurred."

In Australia, Stephen Tunley, founder of gardasilactiongroup.com, had a face-to-face meeting with Australian Health Minister Nicola Roxon and the Chief Medical Officer of Australia, Professor Jim Bishop. As Tunley wrote via e-mail, he presented them with a "comprehensive file of data to consider regarding Gardasil and health issues." The response from Bishop, responding to "specific issues" Tunley had raised at the meeting, was, "The objective scientific evidence supported by experts and governments around the world is that Gardasil remains a safe and effective vaccine." Bishop's final sentences in the letter states, "I trust this information will address your concerns around this vaccine. Thank you again for bringing these to my attention." This phrase can be viewed as conscientious, or as a supreme brush off.

David and Freda Birrell have been active in Scotland. Freda Birrell, who is involved with ICAP.org, sent me comments via e-mail about her political experience in the United Kingdom. Her advice to her American counterparts was "to try to alert as many elected representatives" about the vaccine as possible. In New Zealand, efforts have been put forth by Julie Smith, with her website offtheradar.co.nz. Medications.com has 269 entries on Gardasil, including a link to a CNN report. Numerous sites point to genetic traits or predispositions that can be triggered by Gardasil, and warnings not to get the vaccine bundled with other shots.

Another website that is prominent in posting and disseminating information has been HolyHormones.com, run by Leslie Carol Botha, a health educator and broadcast journalist. In an e-mail exchange she discussed how her site, a repository for articles on women's health, has featured close to 700 articles on Gardasil. She wrote, "I think that the social media networking has made all of the difference in the world - and changed the fabric of how information is passed. This is the first time that Big Pharma has seen a ground swell of people come out against their vaccine." Her archives include "research papers posted on the vaccines and numerous PDF files on adverse reactions." Botha attributes the worldwide connections to creating a movement of awareness.

The grandmother of Jessica Ericzon found Botha's site when she was searching for answers to Jessica's death. I spoke with Jessica's mother, Lisa Ericzon. She has been in touch with three other women who have lost their daughters. "We call each other when we are down," she told me. Before ending our conversation she said, "I never want to hear another mother say, 'I didn't have an idea.' Because," she added, "I didn't have a clue."

This article first appeared on Empowher.

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