XMWare

2018-03-13T16:07:01

(BPT) – Imagine your family carried the gene for a rare, life-threatening condition, but didn’t know it?

For generations, members of Angel’s family experienced fatigue, nerve pain, numbness in limbs, dizziness, shortness of breath and chest pain, but were unable to determine the cause. The answer was hereditary ATTR (hATTR) amyloidosis, a progressive, debilitating, life-threatening condition that typically runs in families.

“Early on, my family used to call hATTR amyloidosis ‘the curse’ because no one knew what it was and those who had it experienced a wide variety of symptoms and misdiagnoses,” Angel said. She witnessed firsthand how the condition, which affects approximately 50,000 people worldwide, can devastate a person’s quality of life.

“I watched my grandfather go from building houses and doing construction to being wheelchair bound and bedridden.”

Angel’s family’s experience was recently chronicled in “Living a Rare Life,” a new downloadable booklet sharing their personal account about how they’ve been living with this condition across generations. Like many rare conditions, hATTR amyloidosis varies from individual to individual and is often misdiagnosed because its wide array of symptoms, like shortness of breath, numbness of fingers and toes, constipation/diarrhea and headaches, resemble other, more common conditions.

While the degree and severity of symptoms vary from person to person, hATTR amyloidosis can lead to significant disability and a shortened life expectancy. Obtaining an early and accurate diagnosis is critical.

While Angel tested negative for the condition, she has taken an active role serving as an advocate and caregiver for her family. “The first step to managing a hereditary condition is knowing your family health history and identifying gaps in knowledge about genetic disorders,” said Angel. “Today my mom and many of her siblings are battling hATTR amyloidosis, but now we know how to recognize the symptoms and better manage them.”

Here are a few of Angel’s tips to begin conversations with your loved ones about your health history:

1. Initiate a Dialogue. Having open and honest conversations about family health history may play a role in identifying symptoms sooner, reaching an accurate diagnosis sooner and allowing your loved ones to take control of their health.
2. Speak to a Genetic Counselor. Genetic counseling can help your family members understand their chances of inheriting a rare disease gene mutation and become familiar with the testing process. A counselor can help your family to understand potential issues related to genetic testing, like insurance, determine if genetic testing is appropriate and help make sense of results once they are obtained.
3. Become an Advocate. As an advocate, you can be your family’s most valuable resource for learning about a genetic condition. For some family members, it may be helpful for them to know that they have support throughout the journey of the condition. Building a support system can help the entire family continue to make educated decisions.

If you, or someone in your family, experience symptoms consistent with those of hATTR amyloidosis, talk to your doctor and visit hATTRBridge.com for information and resources like the “Living a Rare Life” booklet.

* Angel is partnering with Alnylam Pharmaceuticals to increase awareness of hATTR amyloidosis.

2018-03-14T11:31:01

(BPT) – More than 20 years ago, as Jennifer Digmann focused on completing her coursework and graduating from college, she began experiencing numbness in her hands and feet and eventually double vision.

After several visits to her primary care doctor, an ophthalmologist and finally a neurologist, she received the diagnosis: multiple sclerosis (MS).

Today, Jennifer lives with a progressive form of MS, a chronic disease that often strikes in the prime of life, has no cure and is the leading cause of non-traumatic disability in young adults. Progressive forms of MS are the most debilitating. Like others who are affected, Jennifer’s symptoms have continued to worsen over time and her level of disability has increased.

Approximately 400,000 people in the U.S. are living with MS, according to the Multiple Sclerosis Association of America. Up to 15 percent are diagnosed with a progressive form of the disease (called Primary Progressive MS), and the majority of those diagnosed with Relapsing MS will transition to a progressive form later in life, according to the National Multiple Sclerosis Society.

For Jennifer, handling her sadness and fear and accepting her diagnosis was almost as challenging as her symptoms. People living with progressive forms of MS tend to experience more difficulties with walking and remaining in the workforce, and they require more assistance with everyday activities, according to the National Multiple Sclerosis Society.

Progressive forms of MS remain frustratingly difficult to treat, primarily because doctors do not fully understand why the disease progresses. Also, many clinical trials for new medicines have been unsuccessful. More research is needed to better understand the underlying biology driving this condition, as well as to develop additional treatment options.

On March 28, 2018, the first ever Progressive MS Day was celebrated by several MS advocacy groups and state governments around the country. This annual day of awareness was created with the goal of recognizing people living with progressive forms of MS, offering support, highlighting resources, programs and services, and, most importantly, calling for further research to advance their care and reduce disability.

Jennifer and her husband, Dan, who himself lives with Relapsing MS, count themselves among the most enthusiastic supporters of Progressive MS Day. As a couple, the Digmanns have dedicated their lives to inspiring and helping others living with MS by sharing their own experiences and perspectives through their blog and radio show.

“My life is not perfect always, but it’s pretty darn good. This disease, my multiple sclerosis, doesn’t hold me back,” says Jennifer.

Seeing the challenges that Jennifer faces with her condition made Dan excited about Progressive MS Day. “Finally, there’s something for people with the progressive forms of MS. Now, hopefully, that opens the door for more awareness and resources, and that’s why a day like this is pivotal,” says Dan.

2018-03-14T14:17:00

(BPT) – One in every four people is affected by anemia, a condition that occurs when the body lacks enough healthy red blood cells.^1,2 Red blood cells carry hemoglobin, a protein that transports oxygen throughout the body, ensuring the body has energy and can function properly.³ Symptoms may vary in severity and can be acute or chronic. Further, many patients present with chronic anemia as a result of other health conditions — cancer, autoimmune and inflammatory diseases, or blood or bone marrow disorders — which each come with their own challenges.^2,4,5 For those with chronic anemia associated with other diseases, life after diagnosis often means adjusting to a new “normal.” Dizziness, trouble breathing and overall tiredness experienced by many with anemia may mean adjusting work schedules, changing exercise regimens, limiting social activities and generally slowing down.²

Kathleen Weis, chief executive officer of The Aplastic Anemia and MDS Awareness International Foundation, calls it the “elephant in the room.”⁶

“Chronic anemia impacts a person’s daily activities. For many, it means not being able to do the things they used to — like going to work or helping around the house. Symptoms, fatigue in particular, can be debilitating,” Weis explained.⁶

For patients, this may necessitate relinquishing aspects of independence. An increasing reliance on caregivers is one of the hardest transitions people living with chronic anemia face. It’s an entirely new learning process and is often coupled with the guilt of knowing there’s an added burden on family members and caregivers. Patients may even experience depression at one point or another.⁷

“It’s a double whammy in terms of emotions. Both patients and caregivers are learning how to deal with the changes,” Weis said. “We put a lot of focus on mindfulness and positivity to help patients and their families through these challenges, in addition to educating about treatment. We believe in treating the body and mind together.”⁶

This March marks the first ever Aplastic Anemia and MDS Awareness Month, an extension from the weeklong observance The Aplastic Anemia and MDS Awareness International Foundation has organized in previous years. Webinars and conferences throughout the month will offer learning opportunities on a wide variety of topics for patients, caregivers and healthcare providers.

Research is another core focus for the Foundation. Treatment options for patients with chronic anemia are limited, and the organization is trying to make sure researching new approaches is seen as a priority. One of the most common treatments is red blood cell transfusions; a process by which donated blood is infused into a patient’s bloodstream.² Frequency of transfusions depends on disease severity, but some patients may need to be transfused as often as every two weeks.^2,8 This is challenging as transfusions are cumbersome, costly and associated with risks.

“Frequent blood transfusions require numerous visits to the doctors, which can be inconvenient for both patients and their caregivers. We would like to see new treatments that not only improve patient outcomes, but may also address current burdens,” said Weis.⁶

Despite the challenges they face, Weis notes that the patients she meets are resilient. “They want you to know they are still very much moving forward and this thing — this disease — is just something they are dealing with each day.”⁶

For more information about The Aplastic Anemia and MDS Awareness International Foundation or Aplastic Anemia and MDS Awareness Month, visit http://www.aamds.org/.

REFERENCES:

1. Pasricha, SR. Anemia: A Comprehensive Global Estimate. Blood. 2014;123(5).
2. American Cancer Society. Anemia in People With Cancer. Available at https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/low-blood-counts/anemia.html. Accessed March 2018.
3. American Cancer Society. Blood Transfusions for People with Cancer. Available at https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/blood-transfusion-and-donation/what-are-transfusions.html. Accessed March 2018.
4. Smith, Jr., R,E. The Clinical and Economic Burden of Anemia. Am J Manag Care. 2010; 16:S59-S66.
5. Gunnar Birgegård. Managing Anemia in Lymphoma and Multiple Myeloma. Therapeutics and Clinical Risk Management. 2008;4(2):527–539.
6. Interview with Kathleen Weis. Conducted by Marissa Vitha and Danielle Kroft for the Celgene Newsroom, January 2018.
7. Korkmaz S, Yildiz, S, et al. Frequency of anemia in chronic psychiatry patients. Neuropsychiatr Dis Treat. 2015;11:2737–2741. doi: 10.2147/NDT.S91581.
8. Langhi, Jr., D., et.al. Guidelines on Beta-thalassemia major – regular blood transfusion therapy: Associac¸ão Brasileira de Hematologia, Hemoterapia e Terapia Celular: project guidelines: Associac¸ão Médica Brasileira – 2016. Brazilian Journal of Hematology and Hemotherapy. 2016;3:8(4):341–345.

2018-03-14T16:09:00

2018-03-15T09:21:01

(BPT) – –

2018-03-15T14:01:00

(BPT) – Most of us who are aging hope to live comfortably and self-sufficiently at home well into our golden years. And, of course, we wish the same for our parents.

The good news is advancements in healthcare and other technology are increasingly allowing aging Americans to live longer at home. The bad news is many are unable to continue to do so once they take a serious fall at home, injuring their hips, heads or other body parts. That’s an all-too-common problem: One in four Americans age 65 and older fall each year, and falling once doubles their chances of falling again, according to the Centers for Disease Control and Prevention (CDC). Falls also are the number one cause of fatal and nonfatal injuries among older adults.

“We treat many older patients who lived happily and productively at home until they tripped and broke a hip,” notes orthopaedic trauma surgeon and American Academy of Orthopaedic Surgeons (AAOS) spokesperson Lisa Cannada, MD. “A broken hip or other fall-related injuries make it difficult for people to live at home again without assistance of some kind and loss of independence. With a little foresight and planning, many of these injuries could be prevented.”

Several steps can be taken to prevent debilitating falls from ever taking place. Consider how the following tips may help you or your loved ones hold on to the comforts of home for a longer period of time:

* Recognize your risk. A number of health issues can make you or your parents more prone to falling, ranging from arthritis to neurological conditions to vision or hearing loss. Various medications, the use of alcohol or simple dehydration may also affect your ability to safely navigate your surroundings. But the more you’re aware of such possible hindrances, the more you can plan for them.

* Optimize your health. Take responsibility for staying as healthy and fit as possible by remaining active, drinking enough water, limiting alcohol, avoiding smoking and eating a healthy diet with plenty of calcium and vitamin D. Annual physicals, eye exams and bone density tests are recommended. Make exercise a priority, and choose something that you enjoy to maintain your bone health and coordination.

* Fall-proof your home. Walk through your home and that of your parents to identify and fix possible hindrances such as slippery surfaces, inadequate lighting, cluttered pathways, unsecured rugs, electric cords, loose flooring, etc. Consider installing grab bars in the shower, securing loose rugs with slip-resistant backings and installing bright motion-detector lights. You also might move clothes, kitchenware and other everyday gear within easier reach. The AAOS and Orthopaedic Trauma Association offer additional tips in this Falls Awareness and Prevention Guide.

* Wear the right shoes. Limit footwear to well-fitting, low-heeled shoes or slippers with rubber or other non-skid soles. Also watch for untied shoelaces.

* Maintain an action plan. If you live alone, have someone check on you daily. If you do fall, you may avoid further injury by using your arms to protect your head instead of trying to break your fall. If possible, fall on your side or buttocks and roll slightly. If you can’t get up after bracing yourself on a wall or furniture, call a friend, relative or 911 for help. Finally, consider wearing a medical alert device 24-7; you never know where and when you’ll need emergency help, and your cell phone may not always be available.

Many aging Americans are able to enjoy long, productive lives in their own homes instead of turning to other accommodations. Increase your chances of making that happen for you and your parents by taking steps to plan for and avoid an injury-producing fall. Find more tips at orthoinfo.org/falls.

2018-03-16T12:01:01

(BPT) – As millennials become more conscious of how their diets affect their daily well-being, they’re driving demand across all generations for greater transparency in the food supply chain. They want to know how their foods were raised, sourced, processed and prepared.

“Sometimes, food is more than food,” report authors of a Nielsen study, indicating 75 percent of adults worldwide think they “are what they eat” and nearly 80 percent use foods to forestall health and medical issues.

Cargill recently conducted a Feed4Thought survey related to how these millennial-driven trends are shaping values related to food — and buying behaviors — for people of all ages.

1. Buying food based on how animals were raised

Consumers report being three times more likely to purchase protein if they know it was raised with natural health supplements. And 58 percent of U.S. consumers are more concerned about food animal welfare now than they were just a few years ago, according to a recent report by researcher Packaged Facts.

2. More emphasis on gut health

Nutritionists are increasingly learning about the role of the stomach and its microorganisms in maintaining our health. The foods we digest reportedly have a profound effect on our balance of “good and bad bacteria,” the soundness of our immune systems and our brain’s release of feel-good chemical serotonin, according to the NCBI. And supplements can be effective as well. In the Cargill survey, 80 percent of respondents report adjusting or supplementing their diets to achieve better gut health.

3. A desire for animals to use the same health supplements humans do

Millennials want to know the origins of their food, and that includes understanding what their meat sources have been fed. A December survey found 62 percent of millennials prefer their animal proteins to have been raised with the same supplements ingested by humans — like probiotics, plant extracts and essential oils. “People want natural, wholesome and sustainable ingredients,” notes Chuck Warta, president of Cargill Premix and Nutrition. “We’ve seen a rise in the popularity of digestive health supplements for humans, echoed in the demand for protein raised with natural supplements.”

4. Bigger emphasis on protein

Eighty-seven percent of U.S. millennials (and 99 percent of those who are college grads) consider protein important to their diets, says one study. And worldwide, a Nielsen report found 34 percent of millennials rate high amounts of protein a very important element in their decisions of which foods to buy. Nutritionists are finding new ways to meet the increased demand for proteins to address the growing world population and their desire for protein-rich diets.

While millennials have been the forerunners in driving new and healthier dietary trends in recent years, their initiatives have spread across all generations to improve awareness and make us all more conscious of exactly what we’re eating.

“It’s important for the animal agriculture community to remain in touch with food trends so we can continue to provide the choices consumers demand,” concludes Hannah Thompson-Weeman of the Animal Agriculture Alliance.

Cargill, a longtime leader in producing sustainable and wholesome foods, recently acquired two companies that specialize in natural, research-proven animal feed products. Read more about the company’s “Feed4Thought” survey at Cargill.com.

2018-03-19T08:01:00

(BPT) – Fitness is central to your well-being and ability to enjoy life to the fullest, however it’s easy to get stuck in a rut. How do you find new interest and motivation so you’re ready to maximize the warm weather months?

Dan Gaz, physical activity and assessment program manager at the Mayo Clinic Healthy Living Program, says there are many things people can do to get a jump-start on their health and wellness.

“Fitness doesn’t have to be complicated or boring,” says Gaz. “There are many creative ways to implement fitness activities into your life that are both fun and invigorating.”

Gaz suggests five simple ways to get a jump-start on summer fitness and energize your workout routine:

Try something new

Gaz says getting outside your comfort zone can be beneficial to your health. “Trying something new helps keep your fitness plan fresh. Plan a visit to the local farmers market to pick up produce. Sign up for a 5k run, or look at your local community education or rec center class catalog and sign up for activities. The social dynamics of these types of events benefit mental as well as physical health.”

Get outside

“Getting outdoors is rejuvenating,” Gaz says. “Taking a walk in nature is a nice change of pace that is good for the body and mind.” You can go for a walk, run or take a stroll around a local park. “Just being outdoors shakes things up and you may find higher levels of energy as you breathe in the fresh air. Plus, getting a daily dose of vitamin D from the sun does the body good.”

Bring friends

“It’s no secret when you work out with other people they tend to hold you accountable, but there’s also more benefit than just that,” says Gaz. “When you take an exercise class, join a running club or biking group, you may end up pushing yourself harder. The people next to you become your exercise advocates and suddenly, you’ll have the desire to keep up and do more. This can accelerate reaching your fitness goals.”

Rethink commuting

“Anything you can do to break up the monotony of sitting is a good thing.” Try being creative in commuting and how you travel throughout the day. “If possible, walk or bike to work or the grocery store. You can also take the bus, get off a couple blocks early and walk the rest of the way. A little planning ahead of time can help you accomplish multiple things at once: You’re getting exercise, completing an errand and reducing your carbon footprint.”

Be purposeful

“You may only have a few minutes a day to dedicate to exercise, but that doesn’t mean you can’t make a big impact,” says Gaz. “Being purposeful with your choices is important. For example, use intervals in your workout routine to maximize outcomes. If you enjoy walking, do a brisk 30 or 60 seconds, then walk slower for the same period of time before pushing yourself again. This type of interval training is simple, yet highly effective. It works similarly for other activities like swimming, biking and running.”

To find more tips about improving your health with creative approaches to exercise or to set up a visit with a wellness expert, visit healthyliving.mayoclinic.org.

2018-03-19T12:01:00

(BPT) – It’s no surprise that we all feel the need to get more sleep. However, for some people who feel tired all the time, it may be a sign of a bigger problem. If the urge to sleep during the day is overwhelming and irresistible, it may be excessive daytime sleepiness (EDS).

Roughly 20 percent of Americans have EDS. It is one of the most common complaints people make to a sleep specialist and a symptom that can be seen in a variety of sleep disorders. Being able to recognize the difference between normal sleepiness and EDS is important to your health, but more than 60 percent of Americans find it difficult to do, according to a new survey of 3,000 people conducted by Jazz Pharmaceuticals.

“Occasionally feeling tired is normal,” says Dr. Raj Dasgupta, pulmonary and sleep specialist at the University of Southern California’s Keck School of Medicine. “People with EDS have a hard time staying awake or alert during the day and may doze off during inappropriate times such as during meals, in the middle of a conversation or even when in a car stopped for a few minutes in traffic.”

EDS is a hallmark symptom of narcolepsy. Not everyone who has EDS has narcolepsy, but everyone who has narcolepsy has EDS. Narcolepsy affects approximately 1 in 2,000 Americans. It is a chronic neurological disorder in which the brain can’t control sleep-wake cycles normally. A narcolepsy diagnosis can be tricky because many disorders, such as depression, insomnia and sleep apnea, have some of the same symptoms. This may be why it is estimated that half of those with narcolepsy are undiagnosed.

Narcolepsy has five major symptoms, but you don’t need to experience them all to have it.

1. Excessive Daytime Sleepiness: This is when you have an uncontrollable urge to sleep during the day.

2. Cataplexy: The weakening of muscles when you feel strong emotions like embarrassment, laughter, surprise or anger. Cataplexy can cause your head to drop, your face to droop, your jaw to weaken or make your knees give way.

3. Sleep disruption: This is when you often fall asleep quickly but wake up frequently throughout the night.

4. Sleep paralysis: Feeling unable to move or speak for a short time when falling asleep or waking up. You may also feel like you can’t breathe deeply.

5. Vivid dreaming: Often frightening dreamlike experiences that seem real and happen when falling asleep or waking up. You may experience hearing sounds or words when drifting to sleep or have unwanted visions. Sleep paralysis often accompanies these vivid dreams.

The survey also revealed that a majority of Americans don’t feel they know enough about sleep disorders. Less than 50 percent report being familiar with narcolepsy and only 70 percent report being familiar with sleep apnea. Approximately 60 percent of Americans said that they find it difficult to know when they need to talk to a doctor about daytime sleepiness.

Dasgupta adds, “If you’re having trouble staying awake during the day or experiencing other sleep-related problems, it may be time to talk to your doctor.”

To learn more about narcolepsy, take the Narcolepsy Symptom Screener or to find a sleep specialist near you, visit MoreThanTired.com.

This content is provided by Jazz Pharmaceuticals.

2018-03-19T15:01:01

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