About 27 Million People in the US Have Difficulty Breathing: But Many Don’t Breathe A Word To Their Doctors

2018-10-25T13:01:01

(BPT) – Candyce Norris clearly remembers her wakeup call. In 1996 she was diagnosed with chronic obstructive pulmonary disease, or COPD, a common respiratory disease that makes breathing difficult.

Yet despite her diagnosis, she downplayed her symptoms and how COPD was affecting her everyday life to her doctors for years. “I felt nervous and ashamed to share details about my condition. I didn’t want to be judged because I had smoked for so long,” she said.

“The wakeup call,” Norris said, “was when I realized that no one was judging me. My caregiver and support system, my doctor, everyone wanted to help me manage my symptoms so that I could feel better.”

Norris’ reluctance to share information isn’t unusual for people with COPD. About 27 million people in the U.S. have the condition. Nearly half wait months or years before receiving a proper diagnosis, because many don’t realize the severity of their symptoms — being out of breath, wheezing, chest infections — and attribute them to aging or being out of shape.

In fact, a quarter of patients who experienced common COPD symptoms say they did not mention these symptoms to their healthcare provider. Even after diagnosis, many still downplay their symptoms. In a recent survey, as many as nine out of 10 patients with COPD admitted they are generally not honest with their doctor about their condition.

Dr. David Mannino, pulmonologist and respiratory medical expert at GSK says by the time most people with COPD get a diagnosis, they already have moderate to severe symptoms, and have lost significant lung function. “Without the full picture, a doctor may have trouble helping patients and recommending the right treatment plan. It may also lead to improper care.”

Mannino says being open with your doctor and caregiver is a key to successfully managing COPD. Studies show getting positive social support is linked to benefits like reduced hospitalizations, fewer exacerbations and better habits like engaging in physical exercise.

To encourage the best possible management of COPD, Dr. Mannino says, “patients should put aside any feelings of shame or hopelessness and share their everyday struggles with their doctors and caregivers.”

What is COPD?

COPD is a chronic lung disease brought on by occupational dust or chemicals, smoking or secondhand smoke, and exposure to air pollution. In some cases, people develop COPD due to genetic factors passed down through families. COPD includes two lung problems:

* Chronic bronchitis — coughing and mucus production due to inflammation of the airways over a period of several years

* Emphysema — damage to air sacs in the lungs or collapse of the minuscule breathing pathways in the lungs

For a full list of symptoms and to learn more about COPD, visit www.copd.com.


The power of play

2018-10-24T17:25:00

(BPT) – Play is fun for children, but it’s serious business when it comes to their health and development. From peek-a-boo as a toddler to jigsaw puzzles, dolls and toy trains as an older child, play enriches not only their lives at the moment, but their brain development and a whole host of other things, too.

But, what is play, exactly? According to an American Academy of Pediatrics report, “The Power of Play: A Pediatric Role in Enhancing Development in Young Children,” play is an activity that involves active engagement and results in joyful discovery. It is fun and spontaneous, and involves creating an imaginative reality that contains elements of make-believe.

It’s not about passively watching the television or computer screen, and it’s not about the latest and greatest technical bells and whistles on a smartphone. It’s about simplicity, imagination and the unstructured time to create.

“Simplicity has always been at the forefront of classic toy development with the focus on undisturbed, open-ended play,” said Filip Francke, CEO of Ravensburger North America, whose BRIO line has been creating happy childhood memories for more than 130 years. Their new product line, Smart Tech, complements open-ended play and is compatible with other BRIO World products their parents and even grandparents have likely grown up playing with.

Here are just a few benefits of open-ended, unstructured playtime:

* Amplifies creative role play and inspired storytelling.

* Models “cause and effect.”

* Develops critical thinking skills.

* Improves children’s abilities to plan.

* Helps with language and math development.

* Encourages and deepens relationships with siblings, friends and adults, creating the foundation for more healthy relationships in the future.

* Fosters curiosity.

* Encourages problem solving, collaboration and creativity.

* Helps children manage stress.

The AAP is so adamant about the benefits of play that it encourages pediatricians to write out prescriptions for play at well child visits to remind parents, in this increasingly structured world, to give their children plenty of time to play. That’s because more and more, parents are focused on achievement, after-school programs and increased homework demands, even for elementary students.

Inspiring play is as simple as providing the unstructured time and space.

So, whether it’s brightly colored toys for an infant, showing a mirror to an older child to explore her own expressions, reading to children of all ages, giving your child simple toys like blocks, wooden toys, puzzles or a train set — providing your child the opportunity for a daily dose of play is the right prescription for his or her development.


Putting Health First: Amanda’s Allergic Asthma Story

2018-10-22T09:29:00

(BPT) – Amanda, a fourth-grade literacy teacher, wife and stepmom from Glenwood, Arkansas is among the 26.5 million people in the U.S. affected by asthma. Approximately 60 percent of adults with asthma have allergic asthma, which is caused by allergens in the air, such as dust mites, pet dander or cockroach debris that can trigger a potential asthma attack. Allergic asthma symptoms include coughing, difficulty breathing, wheezing or tightening of the chest. These symptoms can lead to an asthma attack.

Amanda was often sick as a child. “My mother used to say that I would walk across the floor and experience asthma symptoms,” she said. Her health constantly fluctuated, even after her allergist prescribed multiple medications including inhaled corticosteroids. “I’d get better, and then I’d get symptoms again,” she explained.

In her early 30s, Amanda continued to experience asthma. “I was taking multiple medications a day, and I had to do breathing treatments at home,” she said. “I didn’t want to have to take so much medicine. It seemed like whatever I was taking wasn’t helping enough.”

In 2017, Amanda’s health took a turn for the worse when she experienced a severe asthma attack at work. Following that incident, her allergist diagnosed her with allergic asthma with triggers including cat dander and dust mites.

Since her severe allergic asthma was not well controlled, Amanda’s doctor recommended adding a prescription subcutaneous injectable medicine called XOLAIR® (omalizumab) to help decrease her allergic asthma attacks and symptoms. After doing research, including reading the warnings such as anaphylaxis, a severe, life threatening allergic reaction, she decided with her doctor that this treatment was worth a try.

“I’m just thankful that medicine has come this far. I wish I’d known about it a long time ago,” Amanda said. Since taking XOLAIR, she has seen improvements in her allergic asthma symptoms and is having fewer asthma attacks. Amanda is also aware of and tries her best to avoid her allergic triggers. While XOLAIR worked for Amanda, it may not be right for everyone. She advises others to seek help from a specialist right away. “If your body is telling you something is wrong, go speak with an allergist or pulmonologist.”

Visit Xolair.com for more information about allergic asthma and how it can be treated. Ask your doctor if XOLAIR might be right for you.

INDICATION & IMPORTANT SAFETY INFORMATION

What is XOLAIR? XOLAIR® (omalizumab) for subcutaneous use is an injectable prescription medicine used to treat patients 6 years of age and older with moderate to severe persistent asthma whose asthma symptoms are not controlled by asthma medicines called inhaled corticosteroids. A skin or blood test is performed to see if you have allergies to year-round allergens.

XOLAIR is not used to treat other allergic conditions, acute bronchospasm or status asthmaticus.

What is the most important information I should know about XOLAIR? Severe allergic reaction. A severe allergic reaction called anaphylaxis can happen when you receive XOLAIR. The reaction can occur after the first dose, or after many doses. It may also occur right after a XOLAIR injection or days later. Anaphylaxis is a life-threatening condition and can lead to death. Go to the nearest emergency room right away if you have any of these symptoms of an allergic reaction:

  • wheezing, shortness of breath, cough, chest tightness, or trouble breathing
  • low blood pressure, dizziness, fainting, rapid or weak heartbeat, anxiety, or feeling of “impending doom”
  • flushing, itching, hives, or feeling warm
  • swelling of the throat or tongue, throat tightness, hoarse voice, or trouble swallowing

Your healthcare provider will monitor you closely for symptoms of an allergic reaction while you are receiving XOLAIR and for a period of time after your injection. Your healthcare provider should talk to you about getting medical treatment if you have symptoms of an allergic reaction after leaving the healthcare provider’s office or treatment center.

Do not receive XOLAIR if you are allergic to omalizumab or any of the ingredients.

Before receiving XOLAIR, tell your healthcare provider about all of your medical conditions, including if you:

  • have a latex allergy or any other allergies (such as food allergy or seasonal allergies). The needle cap on the Xolair prefilled syringe may contain latex
  • have sudden breathing problems (bronchospasm)
  • have ever had a severe allergic reaction called anaphylaxis
  • have or have had a parasitic infection
  • have or have had cancer
  • are pregnant or plan to become pregnant. It is not known if XOLAIR may harm your unborn baby.
  • are breastfeeding or plan to breastfeed. It is not known if XOLAIR passes into your breast milk. Talk with your healthcare provider about the best way to feed your baby while you receive XOLAIR.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins or herbal supplements.

How should I receive XOLAIR?

  • XOLAIR should be given by your healthcare provider, in a healthcare setting.
  • XOLAIR is given in 1 or more injections under the skin (subcutaneous), 1 time every 2 or 4 weeks.
  • In asthma patients, a blood test for a substance called IgE must be performed prior to starting XOLAIR to determine the appropriate dose and dosing frequency.
  • Do not decrease or stop taking any of your other asthma medicine unless your healthcare providers tell you to.
  • You may not see improvement in your symptoms right away after XOLAIR treatment.

What are the possible side effects of XOLAIR?
XOLAIR may cause serious side effects, including:

  • See, “What is the most important information I should know about XOLAIR” regarding the risk of anaphylaxis.
  • Cancer. Cases of cancer were observed in some people who received XOLAIR.
  • Inflammation of your blood vessels. Rarely, this can happen in people with asthma who receive XOLAIR. This usually, but not always, happens in people who also take a steroid medicine by mouth that is being stopped or the dose is being lowered. It is not known whether this is caused by XOLAIR. Tell your healthcare provider right away if you have rash; chest pain; shortness of breath; or a feeling of pins and needles or numbness of your arms or legs.
  • Fever, muscle aches, and rash. Some people who take XOLAIR get these symptoms 1 to 5 days after receiving a XOLAIR injection. If you have any of these symptoms, tell your healthcare provider.
  • Parasitic infection. Some people who are at a high risk for parasite (worm) infections, get a parasite infection after receiving XOLAIR. Your healthcare provider can test your stool to check if you have a parasite infection.
  • Heart and circulation problems. Some people who receive XOLAIR have had chest pain, heart attack, blood clots in the lungs or legs, or temporary symptoms of weakness on one side of the body, slurred speech, or altered vision. It is not known whether these are caused by XOLAIR.

The most common side effects of XOLAIR:

  • In adults and children 12 years of age and older with asthma: pain especially in your arms and legs, dizziness, feeling tired, skin rash, bone fractures, and pain or discomfort of your ears.
  • In children 6 to less than 12 years of age with asthma: common cold symptoms, headache, fever, sore throat, pain or discomfort of your ears, abdominal pain, nausea, vomiting and nose bleeds.

These are not all the possible side effects of XOLAIR. Call your doctor for medical advice about side effects.

You may report side effects to the FDA at (800) FDA-1088 or www.fda.gov/medwatch. You may also report side effects to Genentech at (888) 835-2555 or Novartis Pharmaceuticals Corporation at 888-669-6682.

Please see full Prescribing Information, including Medication Guide for additional Important Safety Information.

XOL/070518/0134 10/18


Navigate4Me: Offering a Trusted Guide Along Your Health Journey

2018-10-18T15:09:00

(BPT) – How would your life be different if you had one person to guide and support you when you’re at your most vulnerable?

That kind of help made a life-changing difference for 72-year-old Melinda Lacy.

Three weeks after a total knee replacement surgery, and facing a second, Lacy felt overwhelmed and helpless. So an unexpected call from Glenda Cotrone, a health navigator with UnitedHealthcare’s Navigate4Me program, came at the perfect time. Lacy needed to recover enough to have the second surgery, which was scheduled in six weeks. And this time she would need to transition from the hospital to a rehabilitation facility — a transition that seemed both intimidating and complicated.

The two formed a team — and an unbreakable bond — with Cotrone serving as Lacy’s single point of contact at UnitedHealthcare for all of her questions and concerns along her health journey. Cotrone became Lacy’s biggest advocate and cheerleader — encouraging her, researching rehab facilities, answering questions and supporting her along the road to recovery. And Lacy was able to focus on what mattered most: getting back on her feet.

Introduced in 2017, Navigate4Me is available at no additional cost to people with UnitedHealthcare Medicare Advantage plans facing complex health issues and pairs them with a single point of contact to coordinate care, address claims issues, provide social support and help with other needs.

“Our team provides a trusted advocate and a consistent resource to handle the details,” said Rebecca Goheen, who manages the Navigate4Me program. “The issues our members face can be difficult, but we help them navigate the system, walking alongside them every step of the way.”

Health navigators talk with individuals — sometimes daily — along with their family members and caregivers to fully understand all the factors that play a role in their overall health. Then they create a plan to tackle together.

For Lacy, the constant encouragement and assistance from Cotrone made all the difference in the world. She said, “When you have someone as knowledgeable and compassionate as Glenda, you can’t go wrong. It was invaluable to have somebody to bounce things off of, and she was my person.”

UnitedHealthcare expects to help 250,000 people through Navigate4Me in 2018. To learn more about Medicare Advantage plans that include the program, visit UHCMedicareHealthPlans.com.

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Plans are insured through UnitedHealthcare Insurance Company or one of its affiliated companies, a Medicare Advantage organization with a Medicare contract and a Medicare-approved Part D sponsor. Enrollment in these plans depends on the plan’s contract renewal with Medicare.

Navigate4Me by UnitedHealthcare is not available in all plans.

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Finding a Zebra in a Crowd of Horses

2018-10-17T11:39:00

(BPT) – In medical training, doctors often hear the old adage, “When you hear hoof beats, think horses not zebras!” This concept applies when evaluating and diagnosing patients with what are considered common conditions.

However, sometimes the rare diagnosis is the right one. Dr. Shannon Kasperbauer, an infectious disease physician at National Jewish Health, shares her experience identifying the zebra known as nontuberculous mycobacterial (NTM) lung disease, a chronic and progressive condition.

Looking for the Signs and Risk Factors of NTM Lung Disease

There are many “horses” or common lung diseases that people may be familiar with, such as chronic obstructive pulmonary disorder (COPD) and asthma, but NTM lung disease is a less common “zebra” that, Dr. Kasperbauer advises, at-risk patients should be educated on.

While many may not be familiar with NTM lung disease, everyone comes into contact with NTM bacteria during their daily lives, and certain people are at a greater risk to develop the disease. The most common species of NTM lung disease is called Mycobacterium avium complex or MAC, which accounts for more than 80 percent of all cases in the U.S.

The bacteria can be found in tap water, shower heads, steam from tubs and showers, and soil from parks, gardens and the environment. People can get NTM lung disease when breathing the bacteria in, but most people do not develop the condition because their lungs are healthy enough to clear the bacteria. However, those with pre-existing lung conditions are at greater risk of getting NTM lung disease.

Many of the NTM lung disease patients that Dr. Kasperbauer treats also have other lung conditions, such as:

  • Bronchiectasis – when the walls of the airways, or bronchi, become dilated and thickened from chronic inflammation and/or infection, leading to the build-up of mucus
  • COPD – a progressive disease that makes it hard to breathe
  • Asthma – a lung disease that inflames and narrows the airways

In fact, 50 percent of people with bronchiectasis may have active NTM lung disease. Similarly, people with COPD are almost 16 times more likely to get NTM lung disease. That’s because conditions like these that cause damage to the lungs make it difficult to clear NTM bacteria.

Those susceptible to NTM lung disease include people with weakened immune systems, and it is more common in women than in men. The people most at risk for NTM lung disease are those aged 65 and older, an age group that is expected to nearly double by 2030.

Through her clinical practice, Dr. Kasperbauer understands that there are often delays in NTM lung disease diagnosis.

“NTM lung disease can be difficult to diagnose because it may present differently in each patient. The disease can also masquerade as other lung conditions,” said Dr. Kasperbauer.

Those with NTM lung disease may experience symptoms that are similar to other, more common lung conditions, such as coughing, trouble breathing/shortness of breath and feeling tired often. The symptoms can be so similar, that NTM lung disease is sometimes misdiagnosed or not diagnosed at all. Many people believe their symptoms are due to the lung condition they already have. As a result, people can have NTM lung disease for months, sometimes years, without knowing it.

Diagnosing NTM Lung Disease

According to Dr. Kasperbauer early diagnosis is important.

“Our goal as doctors is to diagnose NTM lung disease patients as early as possible to give them the greatest chance of cure,” she explains.

If a doctor suspects that their patient has NTM lung disease, they may:

  • Conduct a physical exam
  • Review medical history
  • Conduct a sputum culture, where your doctor will ask you to cough up mucus and analyze the mucus for mycobacteria
  • Conduct a chest CT scan or X-ray to view the potential damage to your lungs

It’s important to get tested for NTM lung disease and diagnosed early on because the condition can be progressive and chronic. In fact, symptoms can worsen over time, and in some cases, an NTM infection can cause severe, even permanent damage to the lungs.

Learn More About NTM Lung Disease

Dr. Kasperbauer is inspired by each patient who comes into the clinic. Some patients are at the beginning of their journey and have just learned about their diagnosis, while others have been diagnosed for years. Whichever category these patients fall into, there are resources available to help support them at different points in their journey, including those who haven’t been diagnosed yet.

If you think you or a loved one may have NTM lung disease, you can talk to a pulmonologist or infectious disease specialist about getting tested. And visit AboutNTM.com for information about NTM lung disease, including additional tools, support and resources, such as a discussion guide to help prepare for the next doctor’s appointment.

About Dr. Shannon Kasperbauer

Dr. Shannon Kasperbauer is an infectious disease physician and Associate Professor in the Division of Mycobacterial and Respiratory Infections at National Jewish Health in Denver. She is also affiliated with the University of Colorado Hospital and holds professional memberships with the American Thoracic Society (ATS) and Infectious Diseases Society of America (IDSA). Dr. Kasperbauer has clinical interests in chronic respiratory infections related to bronchiectasis, such as nontuberculous mycobacteria and tuberculosis.

Sponsored by Insmed Incorporated.


Respite care: What it is and how it can change your life

2018-10-17T07:01:00

(BPT) – Caring for an aging loved one, especially a parent, can take more commitment than any full-time job. Being on call 24 hours a day is physically and emotionally draining. In many cases, caregivers soldier on without complaint while their stress grows, their relationships weaken and their own health often suffers. If you are your parent’s primary caregiver, you likely already know how hard it is to find time to look after yourself and other family members, run errands or simply rest. Chances are, you just need a break.

That’s where respite care can help. Many caregivers don’t know that respite care is an option, or how this service can change their lives. Most importantly, respite care can help improve the relationship you have with your loved one, while providing a new perspective on how to care for them.

“Respite care taught me a lot about how to care for my mom,” said Sherrie Matteson, who cared for her mother for nearly six years before her mom moved into a Brookdale Senior Living community. “I learned things about caregiving I didn’t know. I recommend respite care for parents and caregivers.”

1. What is respite care?

Respite care offers short-term relief to caregivers, allowing them to recharge, take a vacation or just a short break. It typically involves bringing your loved one to a senior living or skilled nursing community, but professional at-home care can also be arranged. Respite care can also be utilized after a short stay in a rehabilitation facility, a hospital stay or visit to an emergency room. A senior living community can meet your loved one’s care, social and nutritional needs. Respite care stays in a senior living community could last a couple of weeks, while respite care arranged in your home could be as short as a few hours or a full day.

“I felt good about leaving my mom in respite care because I knew she was in good hands and I wouldn’t have to worry about her,” Matteson said.

2. When can respite care be used?

Respite care can be used whenever you need a break or you are planning a larger event like a long vacation. In addition, it can be a valuable resource to use when your loved one’s health further deteriorates or a new complication requires special assistance. Respite care can also be used as a resource to help caregivers think about long-term care. Recognizing you may no longer be able to care for your loved one in a few years, you can use respite care to provide an introduction to a full-time care community.

“Respite care gave me an idea of what to ask and look for when researching long-term memory care,” Matteson said. “I knew what I did and didn’t want for my mom. It helped me make the best senior living decision possible.”

3. How do caregivers know when they need respite care support?

Besides vacations and other date-specific events, you should look for a respite care backup solution whenever the quality of the care you are providing or your own health suffers because of the obligation. Choosing to move forward despite these hardships is only jeopardizing the health of yourself and your loved one. It can also cause friction in your relationship, sometimes leading to resentment. Taking a break — and ideally relaxing and having some fun — will allow you to come back and apply more passion to the care you provide.

4. Where can you find respite care resources?

Many senior living communities, including Brookdale Senior Living, offer respite care services, so they should be your first point of search. Look for senior living communities that are close to you, allowing for easier transportation and visiting opportunities. You can also ask your loved one’s doctor for respite care options in your area. It may even be possible to obtain respite care in your home from a qualified provider. Research your options thoroughly and look for the solution that best matches your need.

5. How much does respite care cost and does insurance cover it?

Not all insurance plans will cover respite care services, so be sure to read your policy. Visit the senior living communities that interest you to learn more about the services they provide and the expenses involved. If possible, bring your loved one to visit the community with you. They will be more positive about the decision if they have a say in where their care is provided.

To learn more about respite care services at Brookdale Senior Living, visit Brookdale.com.


Medicare Part D: 3 factors that could save you money

2018-10-12T15:11:00

(BPT) – Many people are surprised to find out that Original Medicare doesn’t generally cover prescription drugs. For help with the cost of your medications, you can choose a stand-alone Part D plan or a Medicare Advantage plan with prescription coverage.

With Medicare Annual Enrollment running from Oct. 15 to Dec. 7 — the yearly window when you can make changes to your Medicare coverage — now is a good time to find a plan that can best meet your needs.

Kent Monical, senior vice president for Part D at UnitedHealthcare Medicare & Retirement, recommends you consider these three things when choosing a plan.

1. Your drugs.

Prescription drug plans can vary significantly. Each Part D plan has a list of drugs, called a formulary, which shows the drugs it covers.

“When considering a Part D plan, be sure your medications are covered,” Monical said. “Even if you don’t expect to change plans, it’s important to make sure your drugs will still be covered next year, as plans can change from year to year.”

2. Your pharmacy.

Most Part D plans have preferred pharmacy networks. People can typically get their drugs for a lower copay when they visit preferred pharmacies.

“Make sure the plan offers access to pharmacies that are convenient for you,” Monical said. “Some plans also have mail-order pharmacy benefits, and you can get prescriptions delivered to your home for a lower cost than purchasing from a retail location.”

3. Your total costs.

Plans sort drugs into several tiers, with generic or lower-tier drugs generally costing less than drugs on higher tiers. Talk to your doctor about whether a lower-tier drug might be suitable for you, which could help you save money.

“A low monthly premium plan doesn’t necessarily mean it will be the lowest cost plan,” said Monical. “You should also understand the other out-of-pocket costs, including the annual deductible and drug copays.”

The bottom line

Medicare Annual Enrollment is a great time to make sure you have the right prescription drug coverage for your health and budget needs. Monical concludes, “Exploring your Part D options now could help you save money in 2019.”

For more helpful information on Medicare Annual Enrollment, visit UHCOpenEnrollment.com.

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New Study Uses Smartphone Technology to Connect the Dots for People with MS, Doctors and Researchers

2018-10-12T08:01:00

(BPT) – Can you remember the last time you had a headache? How about the last time you ate something that bothered your stomach? Chances are these events are hard to recall, because our brains aren’t wired to retain small, subtle details over time.

But what if remembering these changes could make a difference in your health? This is what life is like for people living with multiple sclerosis (MS), a condition that usually leads to some level of disability. MS symptoms tend to vary, and people living with MS can typically recall some of their more obvious symptoms like trouble seeing or walking. Recalling more subtle changes, however, like problems thinking or speaking, can often be difficult. Yet, the subtle symptoms are equally important as they can signal new signs of disease progression.

“I generally see my patients once or twice a year, and while we have ‘gold standard’ in-office tests to evaluate for new disease activity, it is hard to capture all of the important fluctuations in their symptoms that occur between visits,” said Dr. Jennifer Graves, Associate Professor of Neurosciences and Director of Neuroimmunology Research at University of California, San Diego and Adjunct Professor at University of California, San Francisco. “Because MS symptoms vary day-by-day, we’ve known for quite some time that people’s experience outside of the doctor’s office may hold the key to better understanding and managing the disease.”

Now, the emergence of “Big Data” and wearable healthcare technology is making this a possibility. Just like we use smartphone technology to track things like steps, calories and hours of sleep, a new study is using it to understand the effects of MS on mental and physical functioning in a real-world setting, enabling researchers to see “big picture” trends in the data that could help us one day better understand the disease and how it may lead to disability over time.

The study, called FLOODLIGHT Open, is being led by San Francisco-based biotech medicine manufacturer Genentech. The study uses a proprietary mobile technology delivered through a smartphone app to track a person’s ability to perform simple tasks over the 365 days in a year that someone lives with MS, versus the two or three days they see their neurologist.

The FLOODLIGHT app is designed to collect a continuous stream of data all year long. People are asked to complete a short series of tests in the app that are based on traditional clinical assessments they undergo at their doctor appointments, like the “25-foot walk” for walking ability and a “9-hole peg test” to assess dexterity. The app also uses the smartphone to passively monitor walking ability and mobility throughout the day, without the person having to do much at all.

FLOODLIGHT Open is an open access study looking to enroll 10,000 patients in five years, which means anyone can join, and the anonymous “Big Data” collected through the study is freely available to help accelerate further research and collaboration.

“The availability of this level of data to the medical community is an important step in better characterizing the disability MS patients face in their real-world settings, and the results from this study could one day lead to better treatments and care plans for patients,” continued Dr. Graves, who was an investigator for a trial at the University of California, San Francisco that helped evaluate the FLOODLIGHT technology. “Fellow researchers and neurologists can access the anonymous data to conduct independent research, or for our own patients who’ve enrolled in the FLOODLIGHT study, we can see their test results – with their permission – and monitor their progress over time.”

Importantly, no information that could identify a person is entered into the FLOODLIGHT app, stored on the phone or in the database, so each person entering the study remains anonymous. People can choose to share their results with loved ones or their neurologists if they wish.

Annette, 48, was diagnosed with Relapsing Remitting MS in 2015, and she recently entered into the FLOODLIGHT study after hearing about it from her doctor. For Annette, the opportunity to be involved in this type of research is exciting. “Those of us living with MS want to do all that we can to help each other, so if participating in FLOODLIGHT Open helps doctors understand the disease and that turns into better care one day, I’m all for it. I also have elected to share my data with my doctor, so it gives me peace of mind to know that the app is tracking any changes in my health that I may have otherwise missed.”

To learn more and enroll, visit https://floodlightopen.com or download the FLOODLIGHT app on iTunes for iPhone or Google Play for Android.


Spinal Muscular Atrophy is the Number One Genetic Cause of Infant Mortality – Have You Heard of It?

2018-10-12T08:01:00

(BPT) – 1 in 10,000 babies worldwide are affected by spinal muscular atrophy (SMA), a devastating disease that can cause extreme muscle weakness and paralysis1,2,3

When Layla was born, her mom Desiree started to notice that something was not right – Layla’s legs were floppy and would turn outward like a frog’s when she tried to use them. Also, she wasn’t getting stronger. Then Layla stopped nursing because she was struggling to swallow.

Layla was diagnosed at 10 weeks old with spinal muscular atrophy, or SMA, a devastating disease caused by a defect in a gene – known as SMN1 – that generates the protein required for the survival of cells that control essential voluntary muscle activity such as breathing, swallowing, speaking and walking.1 Without these motor neuron cells, muscles get progressively weaker, eventually leading to the inability to perform these basic functions.1

“I don’t know how long I stayed in the doctor’s office after receiving the diagnosis, holding Layla and crying,” says Desiree. “She was smiling, but our world was forever changed in that moment.”

SMA is the number one genetic cause of infant mortality, affecting approximately one in 10,000 babies globally.1,3 There are multiple subtypes with varying levels of severity. Layla has Type 1, the most severe form of the disease that accounts for 60 percent of all SMA cases.4 Babies with SMA Type 1 have difficulty controlling their head, breathing and swallowing.5,6 These infants do not reach normal developmental milestones and are dependent on their caregivers for even the simplest of movements, like repositioning their bodies and sitting up.3 Sadly, without treatment the majority of babies with SMA Type 1 pass away or need permanent help breathing by the age of two.7 SMA is a disease that significantly affects the lives of not just the diagnosed, but also the loved ones and caregivers on whom they rely.

For Layla, who is now two years old, “A good day is a boring day because that means she is comfortable,” explains Desiree. “It’s the small victories that count – like going all day without hearing a sound from Layla to then hearing her babbling in response to me washing dishes.”

Recent advancements in treatment, as well as promising therapies on the horizon, hope to change the heart-breaking trajectory of SMA – but early diagnosis is critical and increases the chances of rescuing the motor neuron cells before they are lost. Once they are gone, they cannot grow back.8 In recognition of this, the U.S. Department of Health and Human Services recently recommended that SMA be added to the list of tests performed on babies immediately after birth in order to make the diagnosis as soon as possible. Now it is up to each individual state to adopt this national recommendation and add SMA to their newborn screening panels.

“With new technologies and treatments, the future looks so much brighter for people with SMA,” says Desiree. “Raising awareness of SMA is a key part of continuing to make those advances – for Layla and for future generations born with SMA.”

To learn more about SMA, newborn screening, and what you can do to help raise awareness, please visit Cure SMA: http://www.curesma.org/

US-UNB-18-0137 October 2018


[1] National Organization for Rare Disorders (NORD). Spinal Muscular Atrophy http://rarediseases.org/rare-diseases/spinal-muscular-atrophy/. Accessed on March 7, 2018.

[2] Monani UR, De Vivo DC. Neurodegeneration in spinal muscular atrophy: from disease phenotype and animal models to therapeutic strategies and beyond. Future Neurol. 2014;9(1):49-65.

[3] Farrar MA, Park SB, Vucic S, et al. Emerging therapies and challenges in spinal muscular atrophy. Ann Neurol. 2017; 81(3): 355-368.

[4] Verhaart IEC, Robertson A, Wilson IJ,et al. Prevalence, incidence and carrier frequency of 5q–linked spinal muscular atrophy – a literature review. Orphanet Journal of Rare Diseases. July 2017.

[5] d’Ydewalle C, Sumner C. Spinal muscular atrophy therapeutics: where do we stand? Neurotherapeutics. January 2015; 12:303-316.

[6] Spinal muscular atrophy 1. National Center for Advancing Translational Sciences. Genetic and Rare Diseases Information Center. https://rarediseases.info.nih.gov/diseases/7883/spinal-muscular-atrophy-1. Accessed on July 13, 2018.

[7] Finkel RS, McDermott MP, Kaufmann P. et al. Observational study of spinal muscular atrophy type I and implications for clinical trials. Neurology. 2014;83(9):810-7

[8] Govoni A, Gagliardi D, Comi GP, Corti S. et al. Time is motor neuron: therapeutic window and its correlation with pathogenetic mechanisms in spinal muscular atrophy. Mol Neurobiol. 2018;55(8):6307-6318.