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“It’s Lupus”: The Words No Woman Wants to Hear

They’re in the prime of their lives: young women who are finishing college, getting married, starting careers and families. Then comes the devastating diagnosis: systemic lupus erythematosus (SLE), otherwise known as lupus.

Linda Barlow

Linda Barlow

One and a half million Americans are afflicted with lupus, but the disease occurs 10 times more in women than in men and typically strikes when women are between the ages of 15 and 44. Lupus is the leading cause of kidney disease, cardiovascular disease and stroke among young women. Women of color are two to three times more at risk for lupus than Caucasians and are more likely to have disease that is severe.

Lupus is an unpredictable and misunderstood autoimmune disease that ravages different parts of the body; it is difficult to diagnose, hard to live with, and a challenge to treat. Lupus is a cruel mystery because it is hidden from view and undefined, has a range of symptoms, strikes without warning, and has no known cause and no known cure. Its health effects can range from a skin rash to a heart attack.

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A note from our sponsor:  If you or someone you know is living with lupus and struggling to afford the treatments, the HealthWell Foundation may be able to help.  Click here to visit HealthWell’s eligibility page.

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While many people may have heard of lupus, research shows that two-thirds of the public know little or nothing about the disease, and medical research has remained underfunded relative to its scope and devastation.

Lupus Awareness Month was established to provide people around the world the opportunity to unite and raise awareness of the disease. Several patient advocacy groups are recognizing May as Lupus Awareness Month with a variety of activities and outreach programs. We highlight two of them here.

To draw attention to the devastating effects of lupus in women in their twenties — the decade in which lupus is most often diagnosed — the Lupus Research Institute unveiled “Window on Lupus 2020,” a larger-than-life window display at New York City’s Rockefeller Plaza. Seen by about 250,000 people daily, the window display urges young women to talk with their healthcare professional if they have common symptoms of lupus such as persistent fatigue and fevers, swollen joints and/or skin rash.

“Twenty is the age when the future beckons with the brightest promise,” said Margaret Dowd, LRI President and CEO in a statement to the media. “But for many young women diagnosed with lupus, the future can hold the threat of serious consequences — the potential for a stroke, a heart attack, and kidney disease. We want people with lupus to know that there is hope in their future as we work to achieve our 2020 milestone to help prevent organ damage and progression.”

The Lupus Foundation of America is another patient advocacy group working to increase awareness of the disease. The Foundation launched a multi-media campaign this month called “KNOW LUPUS.” The campaign features a series of television public service announcements (PSAs), which include a collection of testimonials and statements from people living with lupus, along with celebrity advocates including Whoopi Goldberg, Tim Gunn and Susan Lucci.

The PSAs encourage people to play an online game that engages them to KNOW LUPUS and make a donation to lupus research.

“The goal of the KNOW LUPUS campaign is to bring greater awareness of lupus and raise funds for lupus research by engaging support from corporations, media, celebrities and community partners,” said Sandra C. Raymond, President and CEO, Lupus Foundation of America. “Everyone needs to KNOW LUPUS to create a future with NO LUPUS.”

Are you or is someone you know suffering from lupus? What are you doing to help spread the word about this disease, especially among young women? Let us know in the comments.

Dealing with Breast Cancer Stresses: Supporting the Supporters

 

Mammogram photoWith one in eight women developing invasive breast cancer in her lifetime, most of us know at least one person who has been diagnosed. Each October, Breast Cancer Awareness month in North America highlights the excruciating experience of this disease and its courses of treatment.

In a previous RealWorldHealthCare.org article, I described the emotionally and physically burdensome aspects of cancer, for the patient. But what can easily be overlooked are the enormous challenges for caregivers, who may be at increased risk of depression, anxiety, and sleep and cardiac disorders, as well as higher blood pressure and reduced immune function.

Unless the caregiver is either a survivor or mental health professional, supporting another through bona fide trauma may exceed one’s emotional capacities. The patient’s psychological responses, let alone physical challenges, might often feel like “too much.” Caregivers’ ongoing recommitment to their own health—including sufficient sleep, regular exercise, healthy diet, and stress-management approaches—may attenuate the enormous strain of caring for someone with breast (or other) cancer. The family caring for me during my treatment were not always so diligent when in taking care of themselves, and even through my own required focus on my own healing, I was keenly aware of the resultant wear on them.

The justifiable focus on the patient may steer caregivers to ignore seeking psycho-emotional support of their own; but doing so puts them at risk for clinical levels of distress. Counseling or peer groups can play a key role in alleviating emotional burdens unique to those in supportive roles. (Local chapters of Gilda’s Club, and its now umbrella Cancer Support Community, offer caregiver options globally.)

I didn’t join a support group until years after my initial diagnosis. Retrospectively, I would have done so from the very start of my own “cancer journey”, in part to gain support for myself, but also to lighten the challenges on my support team. Caregivers would do well to encourage patients/survivors to join dedicated support communities also, to expand the patient’s helping network.

Since patient supporters genuinely want their efforts to be effective, it may be useful to be aware of needs identified by breast cancer patients. From an informal, small survey of survivors, I identified some common themes caregivers may not always think of:

  • Financial assistance. Out-of-pocket costs alone may exceed $700 monthly for cancer patients—even for those with insurance. A fundraising campaign through Facebook or other social media site can help alleviate an enormous burden that significantly compounds breast cancer-related stress.
  • Physical company and gently supportive dialogue. Cancer organizations offer guidance about how to communicate with a survivor/patient, including things not to say.
  • Assistance with appointments and tasks, including filing and organizing of medical records and insurance forms. Lotsa Helping Hands or Google calendars can help volunteers coordinate assistive tasks across the patient’s care giving network.

Several cancer organizations outline additional tips about how to truly be there for a breast cancer patient. While it may seem obvious, the often-overlooked well-being of caregivers is also of paramount importance— both to sustain themselves during prolonged periods of giving aid, as well as promote the healing of all affected by the challenges of breast, or any other, cancer.

Are you in need of assistance with cancer treatment costs? Several copay foundations make funds available to offset copay expenses for cancer patients.

Have you ever been a direct caregiver for a cancer patient? Were you aware that not only cancer patients, but also their caregivers are at increased risk for clinically relevant levels of distress? Tell your story or share your thoughts in the comments section below.

 

An Overview of “Breast Density: How to See Clearly Through the Fog”

Holly Stewart

Holly Stewart

In honor of Breast Cancer Awareness month, RealWorldHealthCare is showcasing an interview with surgical breast specialist, Dr. Kristi Funk, founder of the Pink Lotus Breast Center.  The Beverly Hills, California based center is a state of the art facility, dedicated to the prevention, screening, diagnosis, and treatment of breast cancer. Dr. Funk was interviewed by one of her own cancer patients, Nikki Weiss-Goldstein, who published the interview on Huffington Post.

Breast density, the subject of the article, has become a hot topic because half of the female population has dense breasts, leading to difficulties in detection by mammogram. Breast tissue consists of a combination of dense milk production tissue, and fatty tissue.  Women with lower breast density have mostly fatty tissue, and women with higher breast density have more milk producing tissue, which appears similar to cancer cells leading to missed diagnoses.

Several states now require doctors to inform patients when the majority of their breast tissue is dense because 50 percent of cancers are overlooked in this tissue.  Weiss-Goldstein has dense breast tissue, and her cancer was not detected by mammogram until it was large enough to be physically palpable.  After a double mastectomy, Weiss-Goldstein considers Dr. Funk a hero and thanks her for her life.

The editors and writers at RealWorldHealthCare.org admire the Pink Lotus Breast Center and the work that Dr. Kristi Funk does. We hope you’ll read the article at the link provided above.

Were you aware of differing breast density? Is this going to change how you approach breast health?

When a Nurse Becomes a Two-Time Breast Cancer Patient

In honor of Breast Cancer Awareness Month, we approached two-time breast cancer survivor, Kimberly Martinez, to share her story as part of our Patient of the Month series.  Would you like to share your story with other patients about how cancer affects you or your family to?  Drop us a note at the bottom of the post.

Kimberly and her husband

Kimberly and her husband

My name is Kim Martinez.  I am a nurse, a stay at home mom of three kids and a wife to a husband with a very busy position here in Fort Wayne, Indiana.  Prior to my diagnosis, I was caring for my mother in Ohio, who was diagnosed with breast cancer in an advanced stage.  Unfortunately, she was only 57 years old at the time of her diagnosis.  Her cancer was too far advanced and had spread to her brain, and she passed away at 58 years of age.  Ten months later, I was diagnosed with Stage II Triple Negative Left Breast Cancer.  I was only 39 years old. It was devastating to have to go in and get a biopsy and be told right then and there, all by myself, that I had cancer.  Thoughts of death and dying, thoughts of doctors, surgery, and who is going to take care of my kids, thoughts of how am I going to tell my kids, my family… we live out of state… we have no one here to help us… how are we going to do this… how are we going to afford this…how is my husband going to deal with this?  We lost our son five years prior and I saw the sorrow on his face then, I couldn’t bear to see the pain and suffering that we were going to have to endure now, let alone entertain the thought of him being a single dad.

I credit my mother for saving my life, because had it not been for her cancer, my doctor would have never ordered my mammogram.  I was not yet 40 years old.  However, the death of my mother was still very raw in everyone’s hearts and now I had to share my worst fear: that it was now to be my journey.  Watching my mother face this beast with such grace and dignity, I too knew exactly how I was going to handle my inevitable journey as well. I already knew that I would have a double mastectomy; I already knew that I would take chemotherapy and I had already accepted the idea that, if my physicians ordered radiation, that too would be accepted with grace and dignity.  I was a mother, wife, sister, aunt, friend, teacher – I was not going to let cancer beat me without a challenge.  I also had put this entire challenge in God’s hands.  Whatever my outcome was going to be, it was going to be. So I taught my daughters how to be responsible young ladies at a very early age.  They were only 13 and 12 and my son was only 6. They learned how to do laundry, how to cook, how to do basic housecleaning, and how to become more independent with their homework.  These were skills they needed to learn anyway, why not now?

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Three Ways You Can Reduce the Impact of Cardiovascular Disease this American Heart Month

Most of the readers of this blog know that cardiovascular disease (CVD) is the number one killer of men and women in this country. According to the Centers For Disease Control and Prevention, CVD is a leading cause of disability, preventing Americans from working and enjoying family activities. Out-of-hospital cardiac arrests cause the deaths of an estimated 250,000 Americans each year. CVD costs the United States over $300 billion each year.

Joel Zive

Joel Zive

There are many small but significant actions we can take. Here is what you can do to make a difference: empower or continue to empower patients to take care of themselves.

1. Address the cost of heart medication

If the cost of your medicine is an issue, talk to your doctor or contact a patient assistance program that may be able to help with prescription co-pays.

2. Encourage healthy behaviors

Want people to eat better? Give them coupons for healthy food. Exercise? Give them coupons for short-term memberships to health clubs.

The stakes are higher in our country’s current health care landscape. With more people on health insurance than ever before, we need to do everything we can to empower people to seek help before an emergency and talk to their doctor about what they can do to take better care of themselves. This will have a direct effect on deaths from heart disease.

3. Ask your employer about Automatic External Defibrillators

There are instances in which individuals are dealt devastating genetic hands of cards. Recently, the Philadelphia Inquirer highlighted the plight of a Philadelphia family that had a genetic link to hypertrophic cardiomyopathy, a disease of the heart muscle.

For those who do experience heart issues, or even have a major event such as cardiac arrest, Automatic External Defibrillator (AED) devices can significantly increase the likelihood of survival. AEDs have been available for over 20 years, but in recent years, device makers have reduced the size and cost and increased usability of defibrillators, making public access defibrillation viable. “We believe ease of use is one of the most important qualities in an AED because the potential user may not be well-trained in resuscitating a victim of sudden cardiac arrest,” said Bob Peterhans, General Manager for Emergency Care and Resuscitation at Philips Healthcare. “This is consistent with the American Heart Association’s criteria for choosing an AED.”

While risk factors for CVD are often genetic, the majority of CVD is triggered by factors that are controllable: smoking, diet, and exercise. And this is where individual efforts need to be focused.

For more information on preventing CVD, check out the American Heart Association’s guidelines for taking care of your heart, which are broken down by age. The Centers for Disease Control and Prevention also offer an American Heart Month guide to controlling risk factors for cardiovascular disease. You may also want to check out The Heart Truth, a campaign from the National Institutes of Health to make women more aware of the danger of heart disease.

Read more Real World Health Care heart health-related posts:

Are you taking steps to prevent cardiovascular disease? If you, a family member, or a friend has CVD, what is working for treatment? Share your experiences and insights in the comments section.

Are You Ready to Help Stop Cervical Cancer?

National patient advocacy organizations and allies are urging American women to start the year off right by learning more about cervical cancer and prevention during Cervical Health Awareness Month this January.  Here’s what you need to know.

Paul DeMiglio

Paul DeMiglio

Although enormous strides have been made in the prevention of cervical cancer – which has gone from being the number-one cause of cancer death among American women in the 1950s to now ranking 14th for all cancers impacting U.S. women – much work remains in the fight to end this disease. Cervical cancer is still a major health concern, with approximately 12,000 women diagnosed each year in the United States and more than 4,000 women who die from the disease annually.

Cervical cancer is primarily caused by the human papillomavirus (HPV), the most common sexually transmitted virus in the U.S. impacting 79 million Americans. While HPV is most often the cause, other identified risk factors can include:

  • Smoking;
  • Having HIV or other conditions that weaken the immune system;
  • Prolonged (five or more years) use of birth control;
  • Three or more full-term pregnancies; and
  • Having several or more sexual partners.

While many of these factors don’t always lead to cervical cancer, it’s been shown that the risk of acquiring the disease can be decreased through frequent screening. Once women began regularly getting Pap tests and HPV vaccinations, for example, deaths resulting from cervical cancer decreased by nearly 70 percent in the United States from 1955-1992.

Cervical cancer is preventable because of the availability of a vaccine for HPV and effective screening tests, according to an announcement from the Centers for Disease Control and Prevention (CDC) of Cervical Cancer Awareness Month last year. Although highly treatable, the CDC shows that half of all cervical cancer cases occur in women who rarely or never were screened for cancer. In another 10-20 percent of cases, patients were screened but did not receive adequate follow-up care. The CDC has also issued information regarding the availability and importance of preventative HPV vaccines.

The National Cervical Cancer Coalition (NCCC) and the American Sexual Health Association (ASHA) also advocate for increased awareness of the disease. In its promotion of the event the NCCC provides numerous suggestions on how to spread the word, including:

  • Enlist radio stations to issue PSAs;
  • Share tweets and Facebook posts to educate their networks;
  • Distribute ASHA/NCCC’s news release to local media, with a guide on how to reach out to media networks; and
  • Write to their mayors or local legislative offices to recognize Cervical Health Awareness Month.

It’s also important for providers to know how to most effectively engage families with girls, according to ASHA/NCCC President and CEO Lynn B. Barclay.

“Only about 35 percent of girls and young women who are eligible for these vaccines have completed the three-dose series,” Barclay says. “Parents are strongly influenced by the recommendations of the family doctor or nurse, so we’ll continue developing cervical cancer information and counseling tools designed specifically for health professionals.“

Now we want to hear from you. How can you increase awareness about cervical cancer in your communities? What can organizations, places of employment and other stakeholders do to help heighten visibility around cervical cancer prevention strategies?

Editorial Note: At press time, information regarding expected estimates of cervical cancer rates in the U.S. for 2014 had not been released. Please note that we will include the latest statistics as soon as data becomes available.

Get Your Flu Shot Now to Stay Healthier Later

So you think you’re too busy to get your flu shot? It’s easy to put off, but taking the time to do it sooner rather than later could prevent you from getting sick while helping to protect those you care about – during the holidays and beyond. That’s why the U.S. Department of Health and Human Services (HHS), the Centers for Disease Control and Prevention (CDC), state and local health departments as well as other health agencies are raising visibility around National Influenza Vaccination Week (NIVW), from Dec. 8-14.

Paul DeMiglio

Paul DeMiglio

With the flu season beginning in the fall and not peaking until January-February, it’s certainly not too late to get your influenza shot. In fact, the CDC’s Advisory Committee on Immunization Practices recommends that everyone 6 months of age or older receive it, including:

  • Children
  • Seniors 65 and older
  • Pregnant women
  • American Indians and Alaska Natives
  • Those with underlying health conditions like asthma
  • Those living with conditions including chronic lung disease, heart disease, HIV/AIDS, cancer and diabetes

Although the effectiveness of flu vaccination varies each year, the CDC reports that recent studies demonstrate the evidence-based public health benefits. The Mayo Clinic agrees, calling flu shots your best defense against the flu, enabling “your body to develop the antibodies necessary to ward off influenza viruses.”

“The single best way to protect against the flu is to get vaccinated each year,” said CDC’s Anne Schuchat, M.D., Director, National Center for Immunization and Respiratory Diseases. “Today, flu vaccines are available in more convenient locations than ever. The few minutes it takes to get a flu vaccine can save you from experiencing several unproductive days due to influenza. The most common side effects are mild and short-lasting, especially when compared to symptoms of influenza infection.  Flu vaccine cannot cause flu illness.”

Despite evidence that the influenza vaccine is an effective tool, some still fear that getting their shot might put them at risk for experiencing severe side effects. No more than one or two cases per million people vaccinated acquire Guillain-Barré syndrome, an outcome much lower than the risk of developing severe complications from influenza. From 1976-2006, in fact, estimates show that far more people died from flu-associated deaths in the U.S. (3,000-49,000) than from negative reactions to the vaccines that protect against influenza.

To build awareness and support of NIVW and encourage people to get their shots, the CDC is making a rich variety of online tools and resources available to a wide spectrum of patients, educators and providers, such as:

Partnering with Reckitt Benckiser, Inc., the makers of LYSOL® Brand Products, the CDC is also spotlighting the Ounce of Prevention Campaign, which seeks to empower consumers and professionals with practical tips and information around effective hand hygiene and cleaning habits to prevent infectious diseases like the flu.

Click here to see if the vaccine is available in your area. To find a nearby location to get the vaccine, check out HHS’s “Flu Vaccine Finder” on Flu.gov, enter your ZIP code and share the widget to let your family members, colleagues and friends know where they can go too. HHS also provides a series of informative YouTube videos that cover prevention strategies, share tips for identifying symptoms and provide recommended treatment practices.

You can also make a powerful statement by taking the pledge to get vaccinated for the 2013-14 season, commit to taking a friend with you and in the process spread the word by clicking here. To get the latest updates on flu vaccination efforts, follow the CDC on Twitter (@CDCFlu and @CDCgov) and “like” them on Facebook.

Now tell us if you’ve gotten your flu shot. Where did you go? How long did it take? What ways could providers and health care stakeholders more effectively remind patients to get vaccinated?

Profiles in Courage: Beating Breast Cancer One Story at a Time

As we recognize Breast Cancer Awareness Month, heroes, organizations and allies nationwide are leveraging creative strategies to empower patients and families, educate communities and mobilize supporters to overcome the disease and live healthier.

Paul DeMiglio

Paul DeMiglio

Are You Dense?

Dedicated to “informing the public about dense breast tissue and its significance for the early detection of breast cancer” Are You Dense? seeks to educate the public and raise awareness around dense breast tissue and the need for early detection through online tools and resources in addition to speaking engagements. This organization helps women diagnosed with breast cancer by highlighting what it’s like to live with the disease, advocating changes to public policy around detection and supporting new and existing research.

Athena® Warriors

From the time she was a little girl, six-time Grammy winner singer/songwriter Amy Grant knew that cancer “was a force to be reckoned with.” Amy was inspired at a young age by the work of her father – an oncologist who spent his entire medical career treating cancer – to join the band of warriors. A tireless advocate, she draws courage from the countless women she helps empower every day to fight breast cancer, along with her fellow warriors: Amanda Beard, Angela Stanford and Karen Gooding.

“I am inspired by every Athena Warrior. If my music can bring women together and make a connection, then I have contributed something. Athena water takes a terrible situation and does something good for many; that’s why I love being an Athena Warrior,” Grant said.

Terror for Ta-Tas

Woods of Terror — a haunted theme park in Greensboro, North Carolina — hosts the annual “Terror for Ta-Tas Night” to benefit breast cancer survivors. A percentage of the proceeds from this year’s event will be donated to Cone Health Cancer Center’s “Finding your New Normal” program for breast cancer survivors.

Tami Knutson, Breast Cancer Center Manager for Cone Health, is passionate about helping Terror for Ta-Tas because she believes it will empower more Americans to live healthier and bring us closer to ending breast cancer.

“I teach young women about self-breast awareness,” Knutson said. “There is not another venue that I have access to young people.  Most health fairs attract people in the middle years and older. I find teaching  in such a crazy, unexpected location very rewarding. It catches people off guard and I think my message is really heard.”

The Terror for Ta-Tas event runs from 7:30–11 p.m. Friday, October 11. For event information visit terrorfortatas.com, and to learn more about the “Finding Your New Normal” program e-mail Tami Knutson at Tami.Knutson@conehealth.com.

Tough Enough to Wear Pink

A non-profit marketing campaign sponsored by Wrangler, Tough Enough to Wear Pink (TETWP) began with breast cancer survivor Terry Wheatley who, with Wrangler, challenged cowboys and cowgirls to wear pink at the Wrangler National Finals Rodeo to raise awareness and to honor the women in their lives that had been affected by the disease.  TETWP serves as a springboard for communities to create rodeos and other western events that raise awareness around breast cancer.  By focusing attention on women’s health, this initiative raises money for women’s health education, supports women’s treatment centers and much more.

“The success of the Tough Enough to Wear Pink campaign – which has raised over $14.5 million dollars since its inception in 2004 – is that every community that participates through their rodeo or their western event is encouraged to keep their money locally to do good in their own back yards through contributions to their women’s breast cancer center, the women’s breast cancer wing of the local hospital or whatever breast cancer support group is in need in their community,” Wheatley said. “It is the decision of the local rodeo committee or event on who receives their donation.  The success of the campaign is that it is truly grass-roots, with people raising $5 at a time to support someone in their community.”

For example, Red Bluff Round-Up raises money for breast cancer treatment at the St. Elizabeth Imaging Center in their community of Red Bluff, California, to provide mammograms and other women’s health services directly from the funds generated through their TETWP rodeo event. This is just one of the many examples of how individual rodeos and western events use their funds to help women live healthier lives.

Now tell us how you are touching the lives of women living with breast cancer. What are you doing in your local community, place of worship, school or workplace to spread the word about how we can stop this disease together?

World Heart Day Underscores Why Exercise and Diet Count

This year’s World Heart Day on Sunday, September 29 will focus on raising awareness around changes that individuals – especially women and children – can incorporate into their daily habits to reduce the risk of developing cardiovascular disease (CVD).

Paul DeMiglio

Paul DeMiglio

Created in 2000 by the World Heart Federation (WHF) to highlight heart disease and stroke as the world’s leading causes of death claiming 17.3 million lives each year, advocates will educate the public about prevention strategies through talks and screenings, walks and runs, concerts and sporting events.

It is expected that by 2030, 23 million people will die of CVD, more than the entire population of Australia. Together with its members, WHF reports that 80 percent of premature deaths from CVD could be reduced if individuals take the following actions:

  • Reduce or discontinue use of tobacco
  • Eat healthfully
  • Engage in physical activity

CVD can affect people of all ages and population groups, including women and children, as illustrated in WHF’s infographic that also shares practical tips on how to eat more healthfully and exercise more frequently. To teach children about healthy heart living, WHF also created a leaflet along with a character, “Superheart,” that encourages:

  • Playing outdoor games
  • Cycling
  • Eating a diet rich in fruits and vegetables

The American Heart Association (AHA) recommends increasing daily servings of mostly plant-based foods to help improve cardio health, acknowledging that “many studies have shown that vegetarians seem to have a lower risk of obesity, coronary heart disease (which causes heart attack), high blood pressure, diabetes mellitus and some forms of cancer.”

To support better coronary health outcomes, AHA created five goals for healthy eating that encourage individuals to:

  • Eat more fruits and vegetables.
  • Consume more whole grain foods.
  • Use liquid vegetable oils such olive, canola, corn or safflower as your main kitchen fat.
  • Eat more chicken, fish and beans than other meats.
  • Read food labels to help you choose the healthiest option.

AHA also published an info sheet about the warning signs of a heart attack, which often starts slowly and usually goes unnoticed. This is especially true among women, whose symptoms can often mimic those of the flu. Additionally, it is common among women to put others first, especially their children, and so they usually do not recognize symptoms until it is too late. To address this public health challenge, AHA initiated the Go Red for Women campaign to empower women to know their risk, live more healthfully and share their stories.

The primary warning signs of a heart attack remain the same regardless of gender, however:

  • Chest discomfort
  • Discomfort in other areas of the upper body
  • Shortness of breath
  • Breaking out in a cold sweat, nausea or light headedness

Now tell us your story. Do you know anyone who experienced a heart attack or other heart condition? Are you aware of your own risk level? What could you, your friends or loved ones do differently to live more healthfully?

August Health Awareness Days Provide Opportunities to Take Action

As young people across the country go back to school, patient advocates and government stakeholders are leveraging awareness days to help communities learn about health issues impacting children, prevention strategies and efforts to improve care. Here are some examples:

Children’s Eye Health and Safety Month
Each August organizations including the Envision Foundation underscore the need for screenings and examinations to promote early detection, intervention and prevention of vision problems in children.

Paul DeMiglio

Paul DeMiglio

Vision disorders in children cost Americans more than $5.7 billion in direct and indirect expenses each year, while the overall cost of vision problems nationwide soars to an estimated $139 billion (includes long-term care, productivity loss and medical bills), according to Prevent Blindness America. Treating eye disorders and vision loss early in life helps protect children from developing chronic, lifelong conditions that become more expensive to treat because of long-term, indirect costs that increase as populations age.

“The beginning of a new school year is an exciting time in a child’s life,” Hugh R. Parry, President and CEO of Prevent Blindness America, said in a statement.  “By working together with parents and educators, we hope to give all our kids a bright and healthy start!”

National Immunization Awareness Month
According to the Centers for Disease Control and Prevention (CDC), the National Public Health Information Coalition (NPHIC) highlights the need to improve national immunization coverage levels throughout August. To communicate the importance of immunizations now and throughout the year, NPHIC also developed a toolkit tailored to various populations including babies and pregnant women, pre-teens and teens, young adults, and adults. The toolkit seeks to:

  • Encourage parents of young children to get recommended immunizations by age 2.
  • Help parents ensure older children, preteens and teens have received all recommended vaccines by the time they return to school.
  • Remind college students to catch up on immunizations before they move into dormitories.
  • Educate adults, including health care workers, about vaccines and boosters they may need.
  • Urge pregnant women to get vaccinated to protect newborns from diseases like whooping cough.
  • Raise awareness that the next flu season is only a few months away.

The CDC also makes a wide array of resources available for those who want to learn more about the importance of immunizations or spread the word.

Neurosurgery Outreach Awareness Month
The American Association of Neurological Surgeons (AANS) is among the organizations that underscores why the beginning of the school year is a great time to educate communities about strategies to prevent sports-related head and neck injuries like concussions. AANS provides tools to help others more effectively identify symptoms of potentially serious head/neck injuries and take preventive steps to ensure safety, also offering the following tips:

  • Buy and use helmets or protective headgear approved by the American Society for Testing Materials for sports 100 percent of the time.
  • Remain abreast of the latest guidelines and rules governing sports with a high prevalence of head injuries including cheerleading, volleyball, and soccer.

“Concussion awareness, understanding the symptoms of a potential concussion or other traumatic brain injury, is critically important in all sports,” AANS Public Relations Committee chair Kevin Lillehei, MD, FAANS, said in a statement. “Educating the public is one of the best weapons we have when it comes to combating these types of injuries. That is why it’s so important to raise awareness in the community and explain just what some of the effects are that these injuries have.”

Psoriasis Awareness Month
Sponsored by The National Psoriasis Foundation each year, Psoriasis Awareness Month is dedicated to “raise awareness, encourage research and advocate for better care for people with psoriasis.”

The most common autoimmune disease in the US affecting 7.5 million Americans, Psoriasis occurs when the immune system sends out faulty signals that speed up the growth of skin cells and produce red, scaly patches that itch and bleed. About 20,000 children under 10 are also diagnosed, often experiencing symptoms that include pitting and discoloration of the nails, severe scalp scaling, diaper dermatitis or plaques.

As part of Psoriasis Awareness Month, NPF is creating a community of “Pscientists” to “answer real‑world questions about psoriasis and psoriatic arthritis.”

Spinal Muscular Atrophy Awareness Month
Although it’s considered a “rare disorder” with approximately 1 in 6000 babies born affected by it, Spinal Muscular Atrophy (SMA) is a motor neuron disease that causes voluntary muscles to weaken and in some cases can lead to death, according to the National Institutes of Health’s (NIH) National Institute of Neurological Disorders and Stroke (NINDS). Types I, II and III belong to a group of hereditary diseases that weaken the voluntary muscles in the arms and legs of infants and children, contributing to breathing issues, difficulty eating and drinking, impaired mobility and orthopedic complications.

Families of SMA, which has coordinated activities around SMA Awareness Month since 1996, and the Muscular Dystrophy Association (MDA), are two national organizations that support those living with SMA. Click here to learn about events this month, community networks and research projects for treatment and therapies.

What activities are taking place in your community to support one or more of these awareness days? What could the institutions in your neighborhood, workplace or at your school be doing year-round to more effectively engage populations about critical health issues?

Categories: Access to Care