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low-risk or high-risk. Low-risk strains of HPV may manifest as genital warts. High-risk strains may turn into cancer. Individuals with compromised immune systems or who smoke are at a greater risk for HPV infection and more vulnerable to HPV progressing into precancer and cancer. Meet the individuals who have dedicated their lives to raising awareness about HPV and ensuring that families in the future will no longer be affected by it. She was only 51, with no symptoms. Paulette Crowther, a mother of three, lost her battle to stage IV HPV-related anal cancer in 2010. At the time, there were limited resources to help understand her cancer. Her children – all in their early twenties – were repeatedly shocked and frustrated by this cancer’s stigma, lack of support for patients, limited progress in treatment, and inadequate diagnostic screening. After her death, her three children – Justine, Tristan and Camille Almada launched The HPV and Anal Cancer Foundation, analcancerfoundation.org , a donor-supported research, support and advocacy non-profit organization. The foundation’s goal is to eradicate HPV, and consequently, the 1 million cancers a year this virus causes worldwide. In light of their mother’s needless suffering and untimely passing, they also work to improve survival for anal cancer specifically. Their work has resulted in the first advance in treatment for metastatic anal cancer since the 1970’s. HPV cancer patients often express a feeling of shame and embarrassment about their type of cancer. The foundation addresses the isolation cancer patients often feel by providing resources for prevention, screening, and support. Paulette’s children now understand that when a woman has an abnormal Pap smear, it indicates the presence of HPV. Decades earlier, when their mother was in her 20s, she had been treated for cervical dysplasia, a condition that often precedes cervical cancer – and is also caused by an HPV infection. Frequent monitoring and screening could have caught the cancer earlier when it was treatable. “Our mom, Paulette, was an incredible and loving mother and friend who had LOSING A PARENT TO HPV-RELATED CANCER

monitoring. Last summer Lillian started experiencing alarming symptoms such as pain and rectal bleeding. Her gastroenterologist performed a digital rectal exam and discovered a tumor. Lillian was diagnosed with stage II anal cancer. Her incredibly upbeat attitude and supportive friends circle got her through a difficult treatment course at Memorial Sloan Kettering. Today, she is back to feeling like herself and wants to raise awareness about this rare cancer. WHAT YOU CAN DO: • In October, the FDA approved the expanded use of Gardasil 9 to include individuals 27 through 45 years old. • Women are screened for one HPV-related cancer, cervical cancer. Gynecologists and female health providers use a Pap test to check for abnormal cells on the cervix and/ or an HPV test to look for HPV presence in the cells. • Women can have their provider search for rectal cancer by asking their gynecologist to perform a DARE (digital anorectal exam) as part of a routine exam. This simple 1-2 minute test can detect an abnormal mass. The test is not considered part of a gynecological exam so a patient needs to ask her doctor to perform the test. • In men, a digital anorectal exam, the screening tool for prostate cancer, can detect an anal tumor. An examination of the head and neck can feel for an oral or throat tumor. However, these are not routinely administered and often need to be requested. • See your physician right away if you notice any lumps, bleeding, pain, or abnormal discharge in your throat or anogenital area, including hemorrhoids that do not go away. If your physician is unable to answer your questions, ask for a referral to a specialist, such as a colorectal surgeon who can provide an anal Pap smear and an anoscopy. *

so much more to give to this world,” says Justine Almada, one of the siblings and a co- founder. “She would still be with us today if better prevention, screening, and treatment options were available. The elimination of smallpox, polio, and other infectious diseases gives us confidence that our dream of HPV eradication is possible in our lifetime. We are fiercely working towards that day for HPV, so that no other family will face the terrible loss that our family suffered.” A few months ago, Justine and her siblings met Lillian Kreppel, a recent cancer survivor whohas joined their effort to end these cancers.

LILLIAN KREPPEL

LILLIAN’S STORY Lillian Kreppel has a family history of cancer – she lost her grandmother to colorectal cancer – so the 53-year-old had been getting regular colonoscopies for more than ten years. Like most patients, Lillian assumed a colonoscopy would detect not only polyps in the colon but any rectal abnormalities. The reality is the test only looks at the colon. Many years ago she was diagnosed with human papillomavirus, so she also made frequent visits to her gynecologist for

For more information, contact: The HPV and Anal Cancer Foundation

www.analcancerfoundation.org info@analcancerfoundation.org 646-593-7739

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