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
Choosing a new doctor is an important decision that nearly everyone experiences at one time or another, whether it’s finding a new family physician or pediatrician after a move or searching for a specialist after being diagnosed with a condition such as heart disease, diabetes or cancer. This information can help you find the right physician for your and your family.
Choosing the Right Doctor for You and Your Family
(Family Features) What matters to you when finding a doctor to treat you or your family members?
A recent survey commissioned by the American Board of Medical Specialties found that four out of five people ranked Board Certification as an important factor when selecting a doctor, second only to whether the doctor is covered by their insurance.
Choosing a new doctor is an important decision that nearly everyone experiences at one time or another, whether it’s finding a new family physician or pediatrician after a move or searching for a specialist after being diagnosed with a condition such as heart disease, diabetes or cancer.
When selecting a physician, you want to know the doctor you choose is qualified and that you and your family will receive the best care. Board Certified doctors hold themselves to a higher standard and have demonstrated their knowledge and expertise in their specialty. This higher standard has been found to be important to patients.
“Choosing a doctor is one of the most important decisions you’ll make regarding your health,” said Richard E. Hawkins, MD, president and chief executive officer, American Board of Medical Specialties (ABMS), the leading not-for-profit organization overseeing physician certification in the United States. “Today’s patients have a greater expectation for quality. Board Certified physicians offer people confidence that their doctor has the specialized knowledge, skills and clinical judgment to provide the high-quality care they expect and deserve.”
What is Board Certification?
To find a Board Certified doctor near you, visit CertificationMatters.org.
Photos courtesy of Getty ImagesSOURCE:
American Board of Medical Specialties
A study funded by the National Institutes of Health is testing whether the nicotine patch can improve memory and functioning in people who have mild memory loss or Mild Cognitive Impairment (MCI).
Nicotine to Help Treat Memory Loss?
(Family Features) A study funded by the National Institutes of Health is testing whether the nicotine patch can improve memory and functioning in people who have mild memory loss or Mild Cognitive Impairment (MCI).
The largest and longest running study of its kind, the MIND (Memory Improvement through Nicotine Dosing) Study is looking for 300 volunteers at sites across the United States who have mild memory loss but are otherwise healthy, non-smokers over the age of 55.
“The MIND Study will provide valuable information for researchers with regard to early memory loss that is associated with normal aging and early Alzheimer’s disease, but we need volunteers if we are going to succeed,” said Dr. Paul Newhouse, MD, director of the Vanderbilt Center for Cognitive Medicine and lead investigator for the MIND Study.
According to the Alzheimer’s Association, approximately one in five people age 65 or older have mild memory loss or MCI and are more likely to develop Alzheimer’s disease or other dementias. Currently, there is no FDA-approved medication indicated to treat this condition; however, nicotine stimulates an area in the brain known to be important for thinking and memory, and scientists believe it could be an effective treatment for adults with MCI.
“People often think nicotine is addictive and harmful because it is in tobacco products, but it’s safe when used in patch form,” Newhouse said. “Nicotine is an inexpensive, readily available treatment that could have significant benefits for people experiencing mild memory impairment.”
The MIND Study needs 300 people to enroll in sites across the United States. Researchers are looking for healthy, non-smoking adults over the age of 55 who are in the earliest stages of memory loss to participate in the MIND Study.
Potential study volunteers can learn more by visiting MINDStudy.org or calling 1-866-MIND-150.
Photo courtesy of Getty ImagesSOURCE:
Memory Improvement through Nicotine Dosing (MIND)
There is little information available about epithelioid sarcoma. Patients, advocates, doctors and researchers across the United States are aiming to educate people about this ultra-rare cancer and the unmet need for an effective, tumor-specific treatment. Consider these facts about ES.
The Rarest of the Rare
What to know about a cancer you may not have heard of
(Family Features) A woman celebrating her 40th birthday, a young boy starting second grade or a college grad about to begin his career. All three could develop a rare form of cancer known as epithelioid sarcoma (ES), a form of soft-tissue sarcoma.
What are Soft-Tissue Sarcomas and What is Epithelioid Sarcoma?
How Rare is Rare?
According to the American Cancer Society, a rare cancer is defined as fewer than six new diagnoses per 100,000 people per year.
ES is an ultra-rare cancer. According to available epidemiology and case reports, it is estimated about 600 people are properly diagnosed in the U.S. and Europe each year.
What are the Most Common Types of ES and How Do They Impact Diagnosis?
Dealing with a Diagnosis?
For people faced with a sarcoma diagnosis, it’s important to get a second opinion from a sarcoma specialist. These specialists have extensive knowledge of STS and can determine what form of sarcoma one may have, what stage it is and the best course of treatment. The specialist may confirm the diagnosis with a physical examination, a scan or a tissue sample (biopsy) of the area.
It’s common to feel a range of emotions after a diagnosis of ES, according to Clear View Health Partners, including:
What Treatment Options are Available?
For patients with early stage ES, many elect to have surgery to remove the tumor, which may precede or be followed by radiation therapy or chemotherapy treatment, according to the Journal of Clinical and Aesthetic Dermatology. If the cancer returns or spreads, a patient may undergo radiation therapy and chemotherapy. New treatment options are being studied through clinical research, which is why seeking a specialist in the field is important if one is faced with a diagnosis.
As with many cancers, early detection is important and can increase survival or successful treatment. Typically, the distal form of ES is associated with more favorable survival rates than the proximal form.
4 Things to Do to Address ES Today
1. Don’t ignore your bumps and lumps, see a doctor as soon as possible.
2. Learn more about epithelioid sarcoma and its symptoms.
3. Seek a second opinion.
4. Find support if you’re faced with a diagnosis.
An ES Diagnosis Journey
In the spring of 2008, Maria Voermans’ 4-year-old daughter requested an “airplane ride,” and as Voermans lifted the young girl up with her legs, she had to make an “emergency landing” because of some sudden and significant pain in her upper right thigh.
After a few months, the pain persisted. Voermans continued to jog and play sand volleyball, thinking nothing of it. At the recommendation of her primary care physician, she took some anti-inflammatories and tried to rest, which wasn’t easy to do as a single mother of two young children.
Two more months went by and her leg caused increasing problems. She could feel something in her leg, but never considered it a “lump” because it was not visible on the outside. Voermans took matters into her own hands and visited a sports medicine orthopedic specialist for further testing.
An MRI found a mass in her right leg and she was referred to one of the few musculoskeletal oncologists in Wisconsin, her home state. He ordered a biopsy, which on Voermans’ youngest daughter’s third birthday confirmed her worst fear: it was a rare form of cancer called proximal-type epithelioid sarcoma, and it was stage three. Her biggest concern was not living to experience future holidays, birthdays, graduations and other life milestones with her daughters.
Voermans underwent chemotherapy, radiation therapy and had surgery to remove the tumor. As of July 2018, Voermans reports the cancer has not returned.
Today, she’s a wellness coordinator supporting other people diagnosed with cancer who are undergoing treatment or post-treatment. She’s able to use her own cancer journey to provide empathy to others, and it’s brought satisfaction to the whole experience.
Content courtesy of Epizyme, Inc.
Photo courtesy of Getty Images (Doctor talking to man)SOURCE:
(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 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 Centers for Disease Control and Prevention (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.
Breast cancer. It is a simple phrase representing a complex journey thousands of women travel each year. Even during October, when Breast Cancer Awareness Month brings attention to the disease, many people don’t realize breast cancer is not just one disease; it’s extremely complex and classified into different types. To change the perception that breast cancer is just one disease, consider these tips.
There is No One-Size-Fits-All Breast Cancer
(Family Features) Breast cancer. It is a simple phrase representing a complex journey thousands of women travel each year. Even during October, when Breast Cancer Awareness Month brings attention to the disease, many people don’t realize breast cancer is not just one disease; it’s extremely complex and classified into different types. Understanding the many types of breast cancer is important – not just for the 1-in-8 women who will be diagnosed in their lifetime, – but for those who love them, too.¹
Laura Ross knows first-hand. She was diagnosed with triple-negative, stage I breast cancer when she was 41 years old.
“No one in my family had breast cancer and I had no information,” Ross said. “I had not even heard breast cancer had different types until the results came back from my biopsy.”
Unprepared and in shock, she relied heavily on her support circle, which in addition to her doctor and healthcare team, helped her learn more about her diagnosis. Empowered by this information, Ross had the confidence to make informed treatment decisions with her doctor.
You or someone you love may be affected by breast cancer in your lifetime and have to help make a treatment decision. To change the perception that breast cancer is just one disease, Living Beyond Breast Cancer, Genentech and ThirdLove created the “Not One Type” campaign, which offers these tips:
During October – and year-round – arm yourself with knowledge about the different types of the disease and use that information to be a more empowered patient or caregiver. Visit NotOneType.org to learn more.
Photo courtesy of Getty Images
¹ American Cancer Society. Cancer Facts & Figures 2018. Atlanta: American Cancer Society; 2018.
² Kohler BA, et al. Annual Report to the Nation on the Status of Cancer, 1975–2011, Featuring Incidence of Breast Cancer Subtypes by Race/Ethnicity, Poverty, and State. J Natl Cancer Inst 2015;107(6):djv048.SOURCE:
If you’re one of the millions of Americans who suffers from a chronic illness that requires using needles or sharps outside of the doctor’s office, you may question how to dispose of them safely. There is plenty of information available, but the proper disposal method may be different depending on where you live, work or travel.
How to Safely Dispose Needles and Medical Sharps
(Family Features) If you’re one of the millions of Americans who suffers from a chronic illness that requires using needles or sharps outside of the doctor’s office, you may question how to dispose of them safely. There is plenty of information available, but the proper disposal method may be different depending on where you live, work or travel.
To help ensure people who use needles and sharps at home or on-the-go know how to dispose of them easily and safely, NeedyMeds, a national non-profit organization that provides health care information to consumers, developed tools at SafeNeedleDisposal.org.
“Most people want to do the right thing, but they need specific, succinct information on safe sharps disposal,” said Richard J. Sagall, MD, president of NeedyMeds. “For local guidance presented in a way that is easy to follow, our website is a one-stop-shop.”
According to the U.S. Food and Drug Administration, sharps that are not disposed of properly may cause injury. In order to increase awareness and minimize risk, people who use sharps are encouraged to learn more about local regulations and disposal options.
In many states and communities, people who use sharps may dispose of them by following these three simple steps:
“Some locations have different disposal regulations, which may require people in those areas to take used sharps to special collection points,” Sagall said. “SafeNeedleDisposal.org helps people learn how to get rid of used sharps safely, wherever they happen to be.”
To learn more about disposing used needles and sharps safely, visit SafeNeedleDisposal.org.SOURCE:
As temperatures drop, the spread of cold and flu germs rises. Start the year off healthy and be sure to rid your home of lingering germs that may be hiding in places you don’t expect. These tips can help you prevent the spread of germs.
6 Ways to Fight the Flu
(Family Features) As temperatures drop, the spread of cold and flu germs rises. Start the year off healthy and be sure to rid your home of lingering germs that may be hiding in places you don’t expect.
“I always recommend the flu shot – especially when officials are predicting a harsh flu season like this year – good nutrition and plenty of sleep, but there are other healthy habits we can all develop to help keep ourselves and those around us stay healthy during cold and flu season,” said Dr. Tanya Altmann, pediatrician, best-selling author and founder of Calabasas Pediatrics. “Vaccination is important, but there are other preventative measures that we should all keep in mind.”
These tips from the experts at Clorox can help you prevent the spread of germs:
Learn more about flu prevention at Clorox.com/FluFOMO.
Photo courtesy of Getty ImagesSOURCE:
Interested in Publishing on The Health IDEA?
Send your query to the Publisher today!