The stark reality is that more and more Americans each and every day find themselves taking on the role of caregiver for a family member. This can present immense physical and emotional challenges. The first steps suggested here can help you find some balance as you navigate your caregiver journey.(BPT) - Caring for a loved one with a chronic illness is something millions of Americans do every day. Whether it is a parent, spouse, extended family member or friend, the stress of caring for another adult can take a toll. "I have to do absolutely everything for her," explains Anthony Cowels, whose 71-year-old wife, Florence, was diagnosed with multiple sclerosis in 1986. As he watched her disease progress, his caregiver responsibilities grew. What's more, for some of the years Cowels also cared for his elderly parents, compounding his responsibilities. "It has been a long journey of caregiving," says Cowels, 70. "I try not to let it overwhelm me. I always look for ways to do better." Cowels learned to care for both himself and his wife better through useful tools, education and friendship and by joining a caregiver support group. He says he can "interact with others who identify with my situation.” Family caregiving: A growing trend Cowels represents a growing number of Americans who care for older or aging loved ones. About 41 million family caregivers in the United States provided an estimated 34 billion hours of care to an adult with limitations in daily activities in 2017, notes the AARP report Valuing the Invaluable: 2019 Update. What's more, as the population ages, caregiving demands are increasing while the pool of potential caregivers is decreasing. As the Valuing report states, "Americans will have more older relatives or close friends to potentially care for than children in about 15 years. The U.S. Census Bureau projects that, by the year 2035, adults ages 65 and older will outnumber children under the age of 18 for the first time in U.S. history. This fundamental demographic shift is the result of the aging of the U.S. population, increasing longevity, and a declining birth rate. " Caring for yourself In addition to helping with self-care activities like bathing, dressing and going to the bathroom, family caregivers today often perform complex medical tasks, including wound care, giving injections and handling medical equipment. The tasks that were once provided in hospitals and health care clinics are increasingly the responsibility of family and friends, who are often given little training or support. While many family caregivers often report positive feelings in their role such as a sense of purpose or connection with their loved one, it often comes with feelings of being overwhelmed. Exhaustion, worry, loneliness and financial stress are common challenges caregivers face. If you also work a full-time job, it can be even more difficult to balance your needs and responsibilities. While you may not achieve perfect balance, it is important to prioritize your physical and mental wellbeing, so you can be there for the person you care for. These first steps can help you find some balance as you navigate your caregiver journey:
It is important for family caregivers to stay mentally and physically healthy so they can provide the best care possible to the growing number of people who need support. For helpful tips and caregiver resources, visit www.aarp.org/caregiving. KEYWORDS
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Although rare cancers don’t occur often, they can affect people of all ages and genders. Greater awareness of rare cancers may lead to earlier diagnosis and management, and potentially better survival rates. Consider these facts about soft tissue sarcomas, one type of rare cancer.Understanding Rare Cancers![]() Four facts to know about one type of rare cancer, soft tissue sarcomas(Family Features) Although rare cancers don’t occur often, they can affect people of all ages and genders. A rare cancer is defined as fewer than 15 new diagnoses per 100,000 people per year, according to the National Cancer Institute (NCI). Additionally, as noted by the American Cancer Society (ACS), the 5-year survival rate is lower for people diagnosed with a rare cancer than for people living with more common cancers. Greater awareness of rare cancers may lead to earlier diagnosis and management, and potentially better survival rates.
If you have recently been diagnosed with STS, it’s important to ask your doctor for more information about the specific sub-type you have. For example, if you received a diagnosis of undifferentiated sarcoma, ask your doctor for an integrase interactor-1 (INI1) test to see if you have a rare STS called epithelioid sarcoma (ES). (See sidebar for more on ES.)
Learning More About Epithelioid Sarcoma A rare type of STS, epithelioid sarcoma (ES) accounts for less than 1% of all STS, which themselves account for approximately 1% of all cancers, according to research published in “Archives of Pathology & Laboratory Medicine.” ES can present as a lump or sore on the skin. Notably, more than 90% of ES tumors do not express the INI1 protein, which when present acts to suppress tumor growth. INI1 loss plays an important role in the diagnosis of ES, according to researchers with “The American Journal of Surgical Pathology.” Data from the NCI indicates that approximately 150-200 people in the United States are diagnosed with ES each year. Research published in “The Journal of Clinical and Aesthetic Dermatology” found the disease often occurs in young adults in their 20s and 30s. Because most ES patients are adolescents and young adults, there is a gap in the unique psycho-social needs for this patient population, including resources for patients who miss school while undergoing treatments, as well as fertility considerations later in life. If you or someone you love is living with ES, you can find resources, information and the real-life perspective of an ES survivor at ESsentialsforES.com.
Content courtesy of Epizyme, Inc. Photo courtesy of Getty Images SOURCE:Epizyme
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Vaccine-preventable diseases, such as meningitis, continue to impact our communities, including schools and college campuses. Before your kids head back to school for the spring semester, schedule a wellness visit to talk to their doctor about the two different types of meningitis vaccines needed to help protect against the five vaccine-preventable groups of meningitis.(BPT) - GSK spokesperson Patsy Schanbaum’s daughter, Jamie, was a college freshman when she contracted meningococcal disease, also known as meningitis. “I got the call that every parent hopes they never get — their child has been hospitalized and it’s an emergency. By the time I got to the hospital that night, Jamie was in an induced coma, fighting for her life.” Jamie was diagnosed with meningitis and, to help stop the spread of the disease, the doctors amputated both legs below the knee and her fingers. “Giving the go-ahead to the doctors to amputate her limbs was probably the most difficult decision I’ve ever had to make as a mother, but it was the only way to help save her life,” Patsy said. Early symptoms of meningitis may be similar to those of a cold or the flu. The disease can progress quickly and be fatal, sometimes within 24 hours.1 One in 10 of those who contract it will die, and one in five will suffer long-term consequences, such as loss of limbs, like Jamie.2 “My daughter was fortunate to survive meningitis, but others may not be so lucky, and it shouldn’t be because of a lack of education. As a mother, I feel it is important for parents to educate themselves about the disease and the vaccines available by speaking with their teen’s doctor about it.” There are two different types of vaccines and both are needed to help protect against the five vaccine-preventable groups of meningitis – A, C, W, Y and B.7 Anyone can get meningitis, but adolescents and young adults are at an increased risk for meningitis due to behaviors like living in close quarters, sharing drinks or eating utensils, kissing or coughing.3,4,5,6 Serogroup B has been responsible for 100 percent of US college outbreaks of meningococcal disease from 2011 through March 2019, which involved 13 campuses, 50 cases and 2 deaths among an at-risk population of approximately 253,000 students.3 “I stayed by Jamie’s side for seven months while she recovered. Together we worked to physically and emotionally adapt to a new lifestyle. The journey to recovery was difficult, and at certain points I even felt helpless, but we made it through as a family.” Jamie, also a GSK spokesperson, and Patsy founded The J.A.M.I.E. Group to help educate parents about the impact of meningitis and available vaccinations. “I want to ensure no family ever has to go through what mine did.” Today, Patsy feels empowered as a mother, advocate and spokesperson for GSK, sharing her family’s story to educate parents, teens and young adults about the potential dangers of meningitis and the types of vaccines available to help prevent it. Vaccine-preventable diseases, such as meningitis, continue to impact our communities, including schools and college campuses. Before your kids head back to school for the spring semester, schedule a wellness visit to talk to their doctor about the two different types of meningitis vaccines needed to help protect against the five vaccine-preventable groups of meningitis – A, C, W, Y and B.7 Vaccination may not protect all recipients. For more information, visit http://www.meningitisb.com. Content sponsored by GSK. [1] CDC. Meningococcal Disease: Signs and Symptoms: Available at: https://www.cdc.gov/meningococcal/about/symptoms.html [2] CDC. Meningococcal Disease: Clinical Information. Available at: https://www.cdc.gov/meningococcal/clinical-info.html. [3] Marshall GS, Dempsey AF, Srivastava, Isturiz RE. US college students are at increased risk for serogroup B meningococcal disease. JPIDS. 2019:1-4. [4] CDC. Manual for the Surveillance of Vaccine-Preventable Diseases: Chapter 8: Meningococcal Disease. Available at: https://www.cdc.gov/vaccines/pubs/surv-manual/chpt08-mening.html. [5] CDC. Meningococcal Disease: Causes and Spread to Others. Available at: https://www.cdc.gov/meningococcal/about/causes-transmission.html. [6] Larimer County. Meningococcal Disease. Available at: larimer.org/health/communicable-disease/meningococcal-disease [7] CDC. Meningococcal Vaccination: What Everyone Should Know. Available at: https://www.cdc.gov/vaccines/vpd/mening/public/index.html. KEYWORDS
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For a parent of a child diagnosed with a chronic illness like Crohn’s disease or ulcerative colitis, the future can be scary and overwhelming. Resources are available to help families make sense of many diseases and ailments, and some of these organizations even offer tools specifically designed to help support the care of a child patient
Understanding Pediatric Chronic Illnesses![]() How families can manage inflammatory bowel diseases(Family Features) For a parent of a child diagnosed with a chronic illness, the future can be scary and overwhelming. Assembling a medical team and beginning to formulate a treatment plan, even becoming familiar with a glossary of new terminology, can be taxing. Resources are available to help families make sense of many diseases and ailments, and some of these organizations even offer tools specifically designed to help support the care of a child patient. For example, the Crohn’s & Colitis Foundation is a leading resource for families navigating inflammatory bowel diseases like Crohn’s disease and ulcerative colitis. ![]() What is IBD? Crohn’s disease may occur in any part of the large intestine (also called the colon). In fact, it can happen anywhere in the entire digestive system. However, it most commonly develops right where the small and large intestine meet. In ulcerative colitis, only the colon and rectum are affected. No one knows for sure what causes Crohn’s disease or ulcerative colitis, but experts believe several factors may lead to the development of the diseases, including genes, environmental elements like viruses and bacteria, and inappropriate immune reactions. What are the symptoms? “It is critical that if you suspect your child has inflammatory bowel disease, you seek care with a qualified pediatric gastroenterologist who can carefully and efficiently help determine the diagnosis and begin a treatment plan to help your child feel better, thrive, and maximize quality of life,” said Andrew Grossman, MD, pediatric gastroenterologist and chair of the pediatric affairs committee of the Crohn’s & Colitis Foundation. How does it affect children? They are often overwhelmed by the emotional and psychological side effects of the disease. Learning how to manage the disease is not always easy for children. Parents play an important role in educating their children about IBD, including teaching them they need to take their health seriously and take responsibility for caring for themselves. How can IBD be managed? Maintaining your child’s health may also involve lifestyle accommodations, like organizing your schedule for ample bathroom breaks when away from home. You may also need to work closely with your child’s school to manage absences and academic performance along with any medical care that needs to take place during school hours. Many families also find value in building a network of supportive friends and loved ones. One example, the Crohn’s & Colitis Foundation offers Camp Oasis – a co-ed residential camp program that allows children to meet others like them in a safe and enriching environment. Another resource is justlikemeibd.org , a website featuring stories and videos from teens with IBD as well as information on school, dating, managing stress and diet, research updates, and resources for parents. Is your child ready to manage his or her own care?
Photos courtesy of Getty Images SOURCE:Crohn’s & Colitis Foundation
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(BPT) - In the winter, we tend to be in closer quarters indoors and constantly around friends and family. It is important to be conscious of infectious diseases, such as Methicillin-resistant Staphylococcus Aureus (MRSA), which are spreading rapidly among public places like gyms and schools. MRSA prevention should continue at home, especially for groups at higher risk, like student athletes.
Taking simple measures at home and on-the-go can help you to protect and safeguard your health, environment and family from dangerous bacteria and viruses, including MRSA, this season. Clorox teamed up with Jeanine Thomas, MRSA survivor and founder of MRSA Survivors Network; former NFL player Brandon Noble, who has been personally affected by MRSA; and Saskia V. Popescu, hospital epidemiologist and infection preventionist, to share the following expert tips: 1. Wash your hands frequently with soap and warm water for at least 15 seconds — the time it takes to sing "Happy Birthday" twice — or use an alcohol-based hand sanitizer. “Winter is a prime season for stomach bugs and diarrheal illness, so it’s important to stay vigilant with hand hygiene,” said Popescu. Be extra cautious in public settings like gyms, locker rooms, households and schools, where these viruses are increasingly spreading. 2. Keep to yourself and do not share personal items, such as towels or razors, which contact bare skin. MRSA is easily spread by skin-to-skin contact or touching contaminated items or surfaces. It is also resistant to many antibiotics, making it difficult to treat. 3. Act fast and take care of cuts and open wounds by covering them up with a clean, dry bandage until healed. Seek a medical professional if the wound worsens or doesn’t heal quickly. “When I contracted MRSA, it changed my life. I had no idea such a disease existed and would pose as a threat to my career, health and overall well-being,” said Noble. 4. Use a barrier, such as a towel or clothing, between skin and shared equipment at the gym. MRSA prevention should continue at home, especially for groups at higher risk like student athletes, as MRSA bacteria can remain on surfaces after someone touches them, making it possible for someone else to pick them up. 5. Regularly clean countertops and other surfaces in your home. “Keeping your germs at bay in the kitchen is easy,” said Thomas. “Just mix 1/2 cup bleach with one gallon of water, wipe surfaces and leave solution on for 5 minutes and then rinse.” The Centers for Disease Control and Prevention (CDC) recommends disinfecting surfaces which are likely to contact skin with an EPA-registered disinfectant, like Clorox Regular Bleach with Cloromax. MRSA is one common superbug that can be potentially deadly. Caused by a type of staph bacteria often found on the skin and in the nose, MRSA is easily spread by skin-to-skin contact or touching contaminated items or surfaces. It is also resistant to many antibiotics, making it difficult to treat. The CDC estimates that there are 72,444 infections and 9,194 MRSA-related deaths each year in the U.S alone. “In 2000, I had ankle surgery and ended up infected with the antibiotic-resistant bacteria MRSA. The infection spread to my bone marrow and bloodstream and required many surgeries and rehabilitation,” said Thomas. “Since then I have been dedicated to advocating for patients and families to help inform them and bring awareness of the disease and prevention measures to the general public.” “I wish I had known the simple ways to prevent the spread of this disease, like I do now, as that could have made all the difference,” said Noble. As germs and illnesses spread quickly, especially in close-proximity areas, taking proactive steps to prevent common viruses and bacteria from spreading in the home, at schools and in locker rooms is more important than ever. Learn more on how to prevent the spread of viruses and bacteria, such as MRSA, at Clorox.com. KEYWORDS
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Alleviating some of the uncomfortable symptoms at the first signs of sickness or discomfort will help your child get back to being a kid faster and can aid their long-term health. When pain and discomfort do strike, knowing the signs and symptoms of some of these common problems can help determine the best course of action.(BPT) - From a cough that won’t go away to a sore throat they caught from the classroom, children and their vulnerable immune systems can fall victim to common illnesses quicker and more often than adults. However, while these health issues are typical, it is not always easy to identify what they are when symptoms strike. According to pediatric doctor Dr. Nina Shapiro, an important part in understanding a child’s symptoms is also being prepared to help fight back with the right tools at home and to know when it’s time to bring them to see a doctor. Alleviating some of the uncomfortable symptoms at the first signs of sickness or discomfort will help your child get back to being a kid faster and can aid their long-term health. When pain and discomfort do strike, knowing the signs and symptoms of some of these common problems can help determine the best course of action. 1. Ear pain Ear pain can be caused by myriad issues, including swimmer’s ear, an existing cold, an ear infection or tooth pain traveling up the jawline, among other things. An over-the-counter pain reliever, elevating the child’s head when sleeping and a warm compress on the ear may help lessen the discomfort. However, if the pain continues to worsen, is accompanied by a high fever and/or swelling and pus exists, the best option is to visit a pediatrician for an in-office exam to determine the exact cause. 2. Constipation According to a recent survey commissioned by Pedia-Lax, nearly 45 percent of parents with children between ages 2 and 11 noted their children experience constipation at least once a month. Recognizing the symptoms of constipation can be tricky depending on the child’s age — especially if they can’t voice their issue. Luckily, there are physical and emotional symptoms to look out for, including less than three bowel movements a week, stomachaches, a decrease in appetite and increased irritability. When it comes to treating constipation, not all options are created equal. Shapiro suggests opting for a medicine that’s formulated specifically for children versus an adult formula. Pedia-Lax is the only pediatric brand that offers a full line of laxative products that are fast, safe and specifically made for kids to help support digestive health and ease constipation. To help prevent constipation, encourage your child to eat a well-balanced, fiber-rich diet, drink lots of fluids and speak up whenever they feel they need to use the restroom. 3. Hand, foot and mouth disease Hand, foot and mouth disease is a pesky, highly contagious illness often seen in young children — especially during the beginning of the school year when children are back inside in close quarters. It is caused by a virus similar to the cold virus and, as the name suggests, can involve the hands (primarily the palms), the feet (primarily the soles) and the mouth. Telltale signs are sore throat due to sores on the palate and the lips, sores on the palms and sores on the feet. In general, the throat sores tend to give the worst of the symptoms, leading to inability to swallow, severe throat pain and fevers. Kids that refuse to eat or drink due to throat pain can be at risk for dehydration. The treatment plan includes pain medications, drinking cool liquids and rest. 4. Pink eye From the bus to the classroom to the playground, children often spend a lot of time in close quarters with their friends. While sharing is an important lesson to learn at a young age, kids will often, unfortunately, share their germs too. Pink eye is commonly spread through hand-to-hand contact, which can transport the highly contagious virus and occasionally a bacterium to the eyes. While symptoms like itchy and watery eyes could be mistaken for allergies, watch out for increased yellow or green discharge and a change in color to the whites of the eye, which may indicate pink eye. Over-the-counter eye drops and a warm compress on the eyes can help soothe the irritation at home but, given how fast the virus can spread to family and friends, it’s always best to head to a doctor for medication. Sometimes doctors will prescribe an antibiotic eyedrop if the infection appears to be bacterial and not viral. When sickness strikes, it’s important to be armed and ready with not only the knowledge of the common symptoms of these pediatric health issues, but also the best treatment options so your child can get back to the playground in no time. For more information on children’s digestive health, visit Pedia-lax.com. KEYWORDS
As a parent, you want to be sure your child gets the best and safest care. Anesthesia’s effect on the developing brain is being researched continually, and you’ll be comforted to know that anesthesia provided during one brief surgery is considered safe by the experts at the American Society of Anesthesiologists (ASA).(BPT) - When surgery is necessary, anesthesia ensures your child can safely receive life-saving or corrective treatment while managing the pain and discomfort of the procedure. Anesthesia’s effect on the developing brain is being researched continually, and you’ll be comforted to know that anesthesia provided during one brief surgery is considered safe by the experts at the American Society of Anesthesiologists (ASA). “Parents should rest assured that surgery is only recommended when necessary and your child will be monitored during every minute of the procedure to ensure the safest and most effective care,” said Linda Mason, M.D., ASA president-elect and a pediatric physician anesthesiologist. “In an effort to continually improve anesthesia, physician anesthesiologists have been at the forefront of research on the effects of anesthesia on children — and adults — and continue to study this important issue.” As a parent, you want to be sure your child gets the best and safest care. To that end, ASA offers the following guidance: 1. Don’t delay or avoid surgery: Work closely with your child’s surgeon and other physicians to determine if surgery is the right choice. In most cases, delaying or avoiding surgery may mean the child does not receive much-needed care. For example, if your child’s doctor recommends placing tubes to drain fluid in the ears and prevent ongoing infection, not doing the procedure increases the risk of delayed speech and language development, which can affect social and academic success. 2. Talk to the physician anesthesiologist: Highly trained to ensure safe, high-quality care, the physician anesthesiologist will monitor your child through the entire surgery so he or she stays warm, gets enough oxygen, has stable blood pressure and receives necessary fluids. Depending on the location and type of surgery, your child may have more than one anesthesia option. Be sure to ask the physician anesthesiologist about those options as well as any other questions you have, such as: * How can I ensure my child has a successful surgery? * How can I help my child prepare? * Is anesthesia safe for my child? 3. Rest assured that limited exposure is considered safe: Experts note that a single, relatively short exposure to anesthesia and surgery is unlikely to have negative effects on behavior or learning. And most common surgeries in children require anesthesia for less than two hours. Research continues regarding the use of anesthesia in repeated or longer surgeries. But parents should be confident that physicians are aware of the concerns and will only recommend a surgery or procedure if necessary. “ASA is committed to advancing research regarding this issue and its physician scientist members are active in cutting-edge research both in the laboratory and at the patient’s bedside,” said Dr. Mason. “Through the SmartTots program, ASA partners with the International Anesthesia Research Society and the U.S. Food and Drug Administration (FDA) to support funding to investigate the safety of anesthesia for infants and young children.” Learn about preparing your child for surgery and questions to ask about anesthesia safety for your young child at asahq.org/kidschecklist. Additionally, download ASA’s companion coloring book for children who are about to undergo anesthesia and surgery. The American Society of Anesthesiologists Founded in 1905, the American Society of Anesthesiologists (ASA) is an educational, research and scientific society with more than 52,000 members organized to raise and maintain the standards of the medical practice of anesthesiology. ASA is committed to ensuring physician anesthesiologists evaluate and supervise the medical care of patients before, during and after surgery to provide the highest quality and safest care every patient deserves. For more information on the field of anesthesiology, visit the American Society of Anesthesiologists online at asahq.org. To learn more about the role physician anesthesiologists play in ensuring patient safety, visit asahq.org/WhenSecondsCount. Like ASA on Facebook; follow ASALifeline on Twitter. KEYWORDS
(BPT) - For people living with asthma, managing the condition becomes part of their daily life. But some may not know that, in spite of their best efforts, their asthma may still be uncontrolled. Benjamin Buckley was one of those people. Ben, as he was known, was just 7 years old when he died from asthma-related complications in 2014. Now, Ben’s mother, Cristin Buckley, is sharing his story in an effort to help raise awareness of just how serious asthma can be. According to Cristin, it was a normal Saturday morning in the Buckley household. Ben went to his sister’s basketball game with the rest of the family, but when the game ended, Ben asked if he could go home and use his nebulizer, as he was experiencing an asthma attack. Later that day, Cristin received a frantic call from her husband and daughter and came home to find Ben had collapsed in the driveway. Police and paramedics were already on the scene performing CPR. They were able to start Ben’s heart, but he was unconscious and not able to breathe on his own. He remained in a coma for five days until he passed away. “What we didn’t realize was that Ben was using his rescue inhaler way more than he should have been. We were refilling it once a month,” said Cristin. “The pharmacy just kept refilling the prescription, so we didn’t think it was an issue. Looking back now, we know his asthma was uncontrolled.” And it appears the Buckley family is not alone, as studies indicate that asthma is responsible for deaths every day in the United States, most of which are believed to occur in patients with uncontrolled asthma. “Uncontrolled asthma can have a huge impact on a patient’s health,” said Dr. Purvi Parikh, a New York City-based allergist and immunologist and national spokesperson for the Allergy and Asthma Network. “Patients may not know the signs — but if someone is using their rescue inhaler more than twice a week, and their asthma is interrupting daily activities and sleep, they should really talk to their doctor immediately to assess if it is uncontrolled.” Cristin’s number one priority today is that Ben’s asthmatic twin brother Adam, now 11 years old, is equipped to handle an attack on his own. To ensure he is prepared, Cristin takes Adam for his annual check-up with his allergist before the school year starts. “Make sure their doctor takes the time to sit down and teach them how to properly use their inhaler,” Cristin said. “People think they can just put it in their mouth and take a few puffs and it works just fine, but so much medicine is wasted or doesn’t get into the lungs because they’re not taking a deep enough breath.” Another one of her main priorities, particularly before school starts, is to make sure all of Adam’s inhalers have enough medicine in them. As such, Cristin relies on inhalers fitted with dose counters to help both her and Adam better manage his asthma. A dose counter works by showing the user exactly how many doses are left in the inhaler — similar to looking at a bottle of pills to see how much medicine is left. “I think dose counters are one of the best things ever invented,” Cristin said. “Before they were integrated into inhalers, you were blindly leading your child. You had no idea how much medicine was left.” Dr. Parikh also noted that the addition of a dose counter to asthma management can create a helpful dialogue between patients and their doctors. She explained how the dose counter allows the doctor to see how much medicine has been used since the previous visit and determine if a patient is using their rescue inhaler too frequently. “When using an inhaler that does not include a dose counter, you really are taking a gamble on your life,” said Cristin. For additional information on the importance of dose counters, visit KnowYourCount.com, and for more on Ben and Cristin’s story, visit www.BenWasHere.org. Mrs. Buckley has been compensated for her time in contributing this program. KEYWORDS
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