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 ImagesSOURCE:
If you worry that you or someone you love will get heart disease or even have a heart attack, it’s understandable. Heart disease is the leading cause of death for men and women in the United States. However, research shows you can lower your risk, particularly if you team up with family, friends or co-workers. Consider these five tips that can help lower your risk of heart disease.
5 Ways to Improve Your Heart Health
(Family Features) If you worry that you or someone you love will get heart disease or even have a heart attack, it’s understandable.
Heart disease is the leading cause of death for men and women in the United States, according to the National Heart, Lung, and Blood Institute (NHLBI).
Research shows you can lower your risk, particularly if you team up with family, friends or co-workers. This kind of social support may be the key to your success.
To mark American Heart Month, NHLBI, one of the National Institutes of Health, is inviting people across the country to team up and join #OurHearts, a national heart health initiative that encourages people to improve heart health together.
“Studies show that having positive, close relationships and feeling connected to others benefits overall health, blood pressure, weight and more,” said NHLBI’s Dr. David Goff, director of cardiovascular sciences.
Consider these five tips that can help lower your risk of heart disease:
Risk: An unhealthy diet
Risk: Smoking, even occasionally
Risk: Inadequate or poor-quality sleep
Risk: Uncontrolled stress
Learn about heart health and heart healthy activities in your community at nhlbi.nih.gov/ourhearts. Use #OurHearts on social media to share how you and your friends, colleagues or family members are being heart healthy together.
Photo courtesy of Getty ImagesSOURCE:
National Heart, Lung, and Blood Institute
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.
 CDC. Meningococcal Disease: Signs and Symptoms: Available at: https://www.cdc.gov/meningococcal/about/symptoms.html
 CDC. Meningococcal Disease: Clinical Information. Available at: https://www.cdc.gov/meningococcal/clinical-info.html.
 Marshall GS, Dempsey AF, Srivastava, Isturiz RE. US college students are at increased risk for serogroup B meningococcal disease. JPIDS. 2019:1-4.
 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.
 CDC. Meningococcal Disease: Causes and Spread to Others. Available at: https://www.cdc.gov/meningococcal/about/causes-transmission.html.
 Larimer County. Meningococcal Disease. Available at: larimer.org/health/communicable-disease/meningococcal-disease
 CDC. Meningococcal Vaccination: What Everyone Should Know. Available at: https://www.cdc.gov/vaccines/vpd/mening/public/index.html.
Adults living with schizophrenia may experience a cyclical pattern with their schizophrenia treatment journey, consisting of beginning a new treatment which lessens their symptoms, followed by a lack of adherence with their treatment plan and missing doses and leading to worsening schizophrenia symptoms or a relapse. Finding the right treatment plan, often consisting of a combination of supportive therapies and medication, can help adults control their schizophrenia symptoms.
(BPT) - Schizophrenia is a complex and chronic brain disorder that can interrupt every aspect of an adult’s life. For adults living with serious mental illness, like Jason, the journey to finding the right treatment plan, including medication and supportive therapies, can take years. During that time, adults living with schizophrenia may experience multiple episodes, breakthrough symptoms or relapse. While it can be challenging for many individuals to remember to take their daily medication, it can be especially difficult for adults living with schizophrenia, who after missing doses of their treatment may increase their risk for breakthrough schizophrenia symptoms or relapse.
Jason was diagnosed with schizophrenia when he was in his mid-twenties. Following his diagnosis, Jason struggled for ten years to consistently follow his schizophrenia treatment plan.
“At the time, my schizophrenia hallucinations and delusions were full blown. I thought I had special powers — that when I made eye contact with people, I could talk to them. I thought most people were out to get me, including my parents,” Jason says. “When I was having a lot of challenges, it strained my relationship with my parents.”
Unfortunately, Jason’s story is not uncommon. Adults living with schizophrenia may experience a cyclical pattern with their schizophrenia treatment journey, consisting of beginning a new treatment which lessens their symptoms, followed by a lack of adherence with their treatment plan and missing doses and leading to worsening schizophrenia symptoms or a relapse. As a matter of fact, research has found that adults living with schizophrenia experience on average 9 relapses in less than 6 years. There are multiple factors that can increase the risk of an episode (breakthrough symptoms or relapse), including missing doses or stopping medication.
After trying numerous treatment options and being hospitalized multiple times due to his schizophrenia symptoms, Jason’s doctor talked to him and his parents about switching his medication to a once-monthly injection to limit worrying about missing doses and to help Jason better manage his schizophrenia. Together, they reviewed the potential benefits and side effects of treatment options.
After being treated with a once-monthly injection and participating in supportive therapies, Jason’s symptoms were more controlled.
“For me, it was important to get healthy, which included working with a psychologist and attending group therapy sessions early in my treatment journey, as well as taking my medication and exercising,” Jason said.
By finding a comprehensive treatment plan that worked for him, Jason was able to focus on other things like friends, family, and activities he enjoys like writing, kickboxing, and spending time with his nieces and nephews. “Most importantly,” he said, “I started working with those who were trying to help me. I began to see my parents as allies in my fight. Now I am closer to them than ever.”
Reflecting on his past experiences, Jason now wants to share his personal story to help other adults with schizophrenia navigate their own treatment journey.
“I didn’t ask for this, but I am dealing with it. I want to help other people. Don’t give up!”
If you or a loved one are an adult living with schizophrenia, ask your doctor if a change in your treatment plan could make the difference for you. Learn more at https://www.oncemonthlydifference.com.
Jason is a volunteer with the SHARE Network, a Janssen Pharmaceuticals, Inc., program made up of people who are dedicated to inspiring others through their personal health journeys and stories of caring.
Most folks today are looking for ways to save money in their daily lives. Today, long-term food storage options can be good both for your health and for your budget. This article has helpful tips on how food storage can help anyone eat healthier and cut their food bills.
Long-term food storage options can be good for your health and for your budget. Keeping food long-term may require you to remove air from the packaging. It's also critical that you monitor the time the food has been stored to use it within its expiration date.
The first step to successfully putting away food for long-term use is to carefully monitor the purchase and use-by date. Once you've marked that on the storage container, consider investing in a vacuum sealing tool to make it easy to protect the food against insects, bacterial growth and ice crystal formation. Rice sealed in an airtight canning jar can last up to six years with no sign of insect growth. Bugs are fond of rice, but the processing prior to bagging should kill both bugs and larvae that may live under the husk or germ. According to Vacuum Sealers Unlimited vacuum sealing food removes air from the food which helps prevent bacteria growth, and prevents ice crystals from forming that allows food to stay fresh for much longer.
Processing the Food
Storing prepared food is a simple process, but the steps must be undertaken carefully. You can dehydrate food for both short-term and long-term storage. For the short term, store your dehydrated produce in glass jars so you can keep an eye on it and put it to use quickly. Eat Cured Meats suggests that when preserving meats with salt it’s best to take care to procure salt that's low in nitrates for safe use later. It's also critical to keep the meat at a constant temperature that's above freezing but below 40 degrees Fahrenheit.
Using Up Your Stock
Preserving food for long-term use won't help your budget if you lose track of it and don't use it within a safe period of time. Whether you're using glass jars or vacuum-sealed plastic storage bags it's critical that you carefully label the food and date it. Try to organize your stored food in bins that you can easily rotate the product and use the first-in, first-out method of food preparation.
Whether you're soaking beans or making a meal featuring smoked meat, you want to avoid any food-wasting by forgetting it at the back of the cupboard. Food storage can help anyone eat healthier and cut their food bills. Whether you live near a grocery store or need to drive for an hour to buy a gallon of milk, having food put away for lean times or bad weather can give you confidence.
Speaking of meat, check out this article for tips on how to select the best beef.
NTM (nontuberculous mycobacterial lung disease) is still considered rare, but cases are growing 8 percent each year. In 2018, it is estimated that 75,000–105,000 patients were diagnosed with NTM lung disease in the U.S. Since awareness of NTM lung disease is limited and the symptoms of NTM lung disease, like chronic coughing, feeling tired often and shortness of breath, are similar to other lung conditions, many people who have it may not even know it for months or sometimes years.
(BPT) - Having a friend or loved one with a chronic and progressive condition teaches you many things: patience, understanding and adapting to lifestyle changes after diagnosis. But for Mary, supporting her friend, Barbara, living with a serious lung condition called nontuberculous mycobacterial (NTM) lung disease taught her the importance of listening.
While taking weekly walks together, Mary first noticed Barbara was experiencing respiratory symptoms, such as coughing fits and getting tired very easily. Barbara’s symptoms continued for two years, and Mary later found out that Barbara was living with NTM lung disease — a serious and progressive condition caused by bacteria that can lead to lung damage and respiratory symptoms.
From speaking with Barbara, she realized that while Barbara was relieved to have an explanation for her symptoms, she also felt overwhelmed and scared by her new diagnosis.
Mary recalls, “As her friend, I was upset that she had to face this health issue and wanted to know how I could help. I realized the best way I could show Barbara my support was to ‘walk with her’ and let her know she wasn’t alone.”
About NTM Lung Disease
NTM bacteria are common in the environment and can be found in tap water, showerheads, steam from hot tubs, and soil from parks and gardens. While everyone comes into contact with NTM bacteria during their daily lives, most people do not develop NTM lung disease because their lungs are healthy enough to clear the bacteria. However, people with a history of lung conditions, like bronchiectasis, chronic obstructive pulmonary disease (COPD) or asthma, are more likely to develop NTM lung disease because the damage from these conditions can make it easier for NTM to infect their lungs.
NTM lung disease is considered rare, but cases are growing 8 percent each year. In 2018, it is estimated that 75,000–105,000 patients were diagnosed with NTM lung disease in the U.S. Since awareness of NTM lung disease is limited and the symptoms of NTM lung disease, like chronic coughing, feeling tired often and shortness of breath, are similar to other lung conditions, many people who have it may not even know it for months or sometimes years.
Providing Encouragement and Understanding
Following an NTM lung disease diagnosis, patients may have a hard time coping with the impact the disease can have on their lifestyle. Emotional support from family and friends is crucial to help patients navigate these new challenges.
After learning about Barbara’s diagnosis, Mary encouraged her to speak about the tests she was undergoing and treatment she was taking as well as how she was feeling. Mary was also there to support Barbara through some of the lifestyle changes that she was making to help manage her condition — whether it was hearing about the adjustments she made when traveling or ways to help limit her exposure to NTM bacteria at home.
Mary also understood that keeping up weekly walks helped Barbara physically and emotionally. She made sure that they stuck to their routine and made adjustments whenever necessary, such as walking for shorter distances or slowing down their pace based on how Barbara was feeling.
“Barbara’s diagnosis made our friendship stronger because she knew she could confide in me and receive the support and reassurance she needed — even if that just meant listening,” Mary shares. “While everyone’s experience with NTM lung disease is different, sometimes knowing there is someone willing to listen to what you’re going through can make a world of difference.”
Like many other loved ones of NTM lung disease patients, Mary had never heard about the condition before Barbara’s diagnosis. She let Barbara be her teacher and learned a lot about the condition through her experience. Today, she’s more informed about NTM lung disease and can be a better source of guidance and support for Barbara.
There are also several online patient resources available to learn more about NTM lung disease, such as the Voices of NTM Lung Disease eMagazine on AboutNTM.com, which provides information on living with and managing NTM lung disease through first-person stories from different members of the community, like Barbara and Mary. On AboutNTM.com, you can also access more information on how to join support groups to connect with others who have NTM lung disease, and how to sign up to receive helpful resources.
Sponsored by Insmed Incorporated.
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