(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:

• Join a support group. Ask your health care provider about local options. Community centers are another good resource. If you live in a remote area or have difficulties commuting, online support groups are another useful way to connect with others in similar situations.
• Make time for yourself. When you care for another person and have your own life demands, it can feel as though there is little time left in the day for yourself. Even if it is just 15 minutes, make time to do something you enjoy, such as walking or reading.
• Don't be afraid to ask for help. No one person can do it all. It takes a team to care for someone, especially those with complex medical conditions. You can start by asking your provider about local health care resources and reach out to family and friends for assistance.

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.

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.  

1. There are more than 50 types of soft tissue sarcomas (STS). STS account for about 1% of all cancers and affect soft tissues such as muscle, fat, nerves, blood vessels and skin. Although STS can be found in any part of the body, they are often in the arms or legs, internal organs, the back of the abdominal cavity or in the trunk, head and neck area.

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.)

2. STS can be visible or invisible depending on location. STS may appear as painless bumps under the skin, usually on arms or legs. Some sarcomas begin in the abdomen and typically don’t show symptoms until they grow and press on nearby organs, nerves, muscles or blood vessels. When this occurs, symptoms may include pain and trouble breathing.

3. Early diagnosis can help inform disease management. As with other types of cancer, early diagnosis of STS is key, as earlier treatment may result in more favorable outcomes. Because other conditions can cause similar symptoms, it’s important to check with your doctor if you are experiencing any of the warning signs listed above. If your doctor decides it’s best to “watch and wait,” consider developing a six-week follow-up plan in partnership with your health care team if your symptoms have not improved.

4. Seeking care from a specialist is key. Given the rarity of STS, finding a sarcoma specialist who understands the complexity of this rare disease and can help determine which treatment option is best for you is important. Treatment options depend on multiple factors, including your overall health, the location and type of tumor, its size and whether the disease has spread elsewhere in the body. STS are typically treated with a combination of options including chemotherapy, radiation therapy and surgery. A specialist may also speak to you about participating in a clinical trial where investigational therapies in STS are being studied.

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

(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.

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 and ulcerative colitis are the two most common types of inflammatory bowel diseases (IBD). These chronic conditions produce similar symptoms, use similar therapies, and are both treatable. However, they are not the same.

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?
Despite the differences between Crohn’s disease and ulcerative colitis, both can produce similar symptoms when active, all brought on by chronic inflammation. Symptoms may include diarrhea, rectal bleeding, urgent need to move bowels, abdominal cramps and pain, sensation of incomplete evacuation, and constipation.

“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?
When IBD is diagnosed in childhood, it may be more extensive and follow a more severe course than when it is diagnosed in adulthood. While symptoms are similar in adults and children, some children with IBD experience delayed puberty and some fail to grow at a normal rate. Dealing with disease relapses, frequent doctor visits, hospitalizations, treatments, and even surgery, many children with IBD miss significant school time and social activities.

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?
It is possible to live a full, rewarding, happy, and productive life with IBD. Treatment begins with finding a pediatric gastroenterologist you trust. Your child’s IBD treatment may ultimately involve a wide range of therapies including medication, nutritional adjustments, and surgery.

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?
For young adults, managing IBD may be particularly challenging, and this stage may be further complicated by the transfer of care from a pediatric health care team to an adult health care team. If you have a child taking the next steps into adult care, consider sharing these tips from the Crohn’s & Colitis Foundation and visit crohnscolitisfoundation.org/campus-connection to help your young adult become independent in his or her IBD management:

• Understand your disease and how it affects you personally, including your typical symptoms and signs of a flare. Also, be sure you understand when and how to contact your health care team.

• Know your medications and how much you take. This is especially important when you see other doctors so they can help you avoid medicines that don’t work well with your IBD medications.

• While a parent is still involved, practice becoming your own advocate with your doctor and others, such as school administrators. Ask questions and take an active role in your treatment.

• When your doctor orders tests or procedures, be sure you understand any preparations that are required, and be sure to follow up so you understand the results and any changes necessary to your treatment.

• If you move, enroll in a new insurance plan, or travel, know what medical services will be accessible and covered so you can make the best decisions about your health.

Photos courtesy of Getty Images