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:
Pain can impact nearly every aspect of your daily life from cleaning the house to going to work or playing with your kids. In fact, 100 million Americans suffer from chronic pain, which is pain lasting 3-6 months or longer. Most often, chronic pain is treated using prescription opioids. To help treat your pain with a non-opioid solution, consider these tips.
5 Tips for Coping with Chronic Pain
(Family Features) Pain can impact nearly every aspect of your daily life from cleaning the house to going to work or playing with your kids. In fact, according to the Institute of Medicine, 100 million Americans, or more than 30 percent of the population of the United States, suffer from chronic pain, which is pain lasting 3-6 months or longer.
Most often, chronic pain is treated using prescription opioids. However, the National Institutes of Health estimates 2 million people in the U.S. suffer from substance use disorders related to prescription pain relievers, while 60 people die every day as a result of opioid overdoses, according to the National Safety Council.
"The country is facing intertwined crises of opioid misuse and chronic pain management. Non-opioid, non-pharmacological treatments such as acupuncture and other similar interventions can be essential in handling patients' pain management as a complement to lessen dependency on opioid prescriptions and serve as a more effective holistic therapy for chronic pain," said Dr. Kory Ward-Cook, chief executive officer of the National Certification Commission for Acupuncture and Oriental Medicine (NCCAOM). "The care provided by NCCAOM National Board-Certified Acupuncturists is essential in continuing the movement toward greater integrative and complementary pain care, especially as a non-pharmaceutical alternative to harmful opioid prescriptions."
To help treat your pain with a non-opioid solution, consider these tips:
Set Goals for Yourself
Use Relaxation Techniques
Consider Non-Pharmaceutical Treatment Options
Focus on Nutrition
Keep Track of Progress
Photo courtesy of Getty ImagesSOURCE:
National Certification Commission for Acupuncture and Oriental Medicine
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:
It’s a common misconception: the older you get, the more frequently you need to use the bathroom at night. Nocturia, which forces individuals to get up more than once per night to urinate, is a leading cause of sleep loss and can put one’s health at risk.
Waking up to go to the bathroom multiple times per night? It’s not because you’re ‘getting old’
(Family Features) It’s a common misconception: the older you get, the more frequently you need to use the bathroom at night. Did you know waking up more than once per night to urinate is a medical condition known as nocturia? Shockingly, 64 percent of American adults do not know.
A recent Harris Poll of more than 2,000 U.S. adults, endorsed by The Simon Foundation for Continence, National Association for Continence (NAFC) and the Prostate Conditions Education Council (PCEC), found that approximately one-third of them suffer from nocturia. Nocturia, which forces individuals to get up more than once per night to urinate, is a leading cause of sleep loss and can put one’s health at risk.
“Before receiving treatment for nocturia, I typically wound up making five trips to the bathroom each night, which I knew wasn’t normal,” said Jack Fagan, a 67-year-old resident of Sewell, NJ. “Treatment has made a noticeable impact on my quality of sleep. I find myself more refreshed and have the energy to enjoy time with family and friends.”
Most people living with nocturia (72 percent) reported they are negatively impacted by the condition at night; 43 percent of whom have trouble falling back to sleep, 12 percent indicated they wake up their partners and 10 percent expressed nervousness about tripping or falling while walking to the bathroom. The impact of nocturia-induced sleep loss can be wide-ranging, affecting physical and mental health. Sixty-one percent of nocturia sufferers experience daytime issues as a result of nighttime urination, including: drowsiness, irritability and reduced productivity and concentration.
Sixty-six percent of nocturia sufferers surveyed have never discussed their symptoms with a healthcare professional; half of respondents reported they thought it was a normal part of aging, and 27 percent believed nothing could be done to remedy the problem.
“We see patients who have suffered with nocturia for many years, as it slowly progresses from getting up twice to over four times per night to urinate,” said Roger Dmochowski, M.D., a nocturia sufferer and professor within the department of urologic surgery at Vanderbilt University Medical Center. “In my personal and professional experience, nocturia can have serious implications for an individual’s emotional state and daily life, due to sleep disruption, if not diagnosed and treated. Up until recently, we didn’t have effective treatments.”
The Harris Poll survey was funded by Avadel Pharmaceuticals and Serenity Pharmaceuticals.
Photo courtesy of Getty ImagesSOURCE:
JPA Health Communications
While all of us have experienced the dull pain of a headache and some know the recurrent pulse and throbbing of migraine, few people can understand the severity of pain associated with cluster headache, also known as “suicide headache.”
(BPT) - While all of us have experienced the dull pain of a headache and some know the recurrent pulse and throbbing of migraine, few people can understand the severity of pain associated with cluster headache, also known as “suicide headache.”
What is cluster headache?
Cluster headache is an extremely painful primary headache disorder characterized by recurring unilateral attacks, or attacks that occur on one side of the head. It is called “cluster” headache because headaches typically occur in bouts (or “clusters”) for 6 to 12 weeks, often at the same time each year or day, and are more frequent at night. It begins as sharp pain centered at the eye, temple or forehead, and can be as brief as 15 minutes or as long as several hours. Attacks can strike up to 8 times a day.
The condition, which affects about one to two people in every 1,000, predominantly occurs in males, with symptoms typically manifesting by the age of 30. Those at greater risk of cluster headache include heavy smokers and individuals with a family history of the condition.
“Cluster headache is one of the most painful conditions an individual can experience, known for being potentially more excruciating and debilitating than migraine,” said Stephen Silberstein, M.D., from the Jefferson Headache Center at Thomas Jefferson University in Philadelphia, Pennsylvania. “Sadly, patients diagnosed with cluster headache commit suicide twenty times more than the national average as the pain can be described as unbearable.”
Diagnosis and treatment
Unfortunately, diagnosis of cluster headache may be delayed significantly due to patients and physicians mistaking the end of a bout for resolution of a separate, standalone condition.
Historically, even after the proper diagnosis is made, there have been very few viable therapies for cluster headache, making prevention and treatment strategies a challenge. While the exact cause of cluster headache is unknown, it is typically treated with injectable sumatriptan, a combination of oxygen and various drugs and/or nerve blocks. These methods are associated with barriers to use including a myriad of pharmaceutical side effects. Not surprisingly, 79 percent of patients have been dissatisfied with available treatment options.
Today, patients now have a novel treatment option called gammaCore®(nVNS). gammaCore, the first non-invasive vagus nerve stimulation therapy applied at the neck for the acute treatment of pain associated with migraine and episodic cluster headaches in adult patients, offers a way to treat symptoms without many of the side effects and dose limitations observed with commonly prescribed treatments or the need for invasive and costly procedures. Patients prescribed gammaCore can have reliable access to treatment for up to four cluster attacks per day for 30 days.
“gammaCore has shifted the paradigm by allowing patients to self-administer non-invasive vagus nerve stimulation therapy for acute treatment of cluster headache, resulting in the reduction of pain,” notes Dr. Silberstein. “gammaCore’s efficacy and safety profiles, along with its self-administered mode of delivery, have the potential to not only reduce the side-effect burden associated with other medications but also bring much needed relief to patients.”
For more information on cluster headache and treatment with gammaCore (non-invasive vagus nerve stimulator), please visit http://gammacore.com/.
Important Safety Information
gammaCore (non-invasive vagus nerve stimulator) is indicated for the acute treatment of pain associated with episodic cluster headache and migraine in adult patients.
gammaCore is available by prescription only. U.S. Federal Law restricts this device to sale by or on the order of a licensed healthcare provider.
 *Survey conducted in October 2016 to assess the impressions and perspectives on current treatments and interest in new acute treatment options. A total of 291 subjects participated in the survey, with 177 of them suffering from episodic cluster headaches and 111 suffering from chronic cluster headaches, and 3 patients refrained from answering this question.
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