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:
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 ImagesSOURCE:
Crohn’s & Colitis Foundation
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.
(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.
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