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A Genetic Connection to Kidney Disease

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How APOL1-mediated kidney disease can impact you, your kidneys and your family

(Family Features) A genetic condition that can cause kidney failure, APOL1-mediated kidney disease (AMKD) represents a group of kidney diseases associated with mutations (changes or variants) in the apolipoprotein L1 (APOL1) genes.

Typically, the APOL1 genes – of which every person has two, one from each parent – create proteins that play a role in immunity. However, some people are born with mutations in one or both genes, and having mutations in both can increase the risk of developing kidney disease and even kidney failure.

In honor of National AMKD Awareness Day on April 30, consider this information from the experts at the American Kidney Fund to better understand the disease and become APOL1 aware.

Understanding Risk Factors
Research shows Black people with kidney disease are more likely to develop kidney failure than any other racial or ethnic group. The reasons for these health disparities include social determinants of health, a higher burden of diabetes and high blood pressure in the Black community, barriers to health care access and genetics.

The APOL1 gene mutations evolved over the past 3,000-10,000 years in people who lived in western and central Africa and are associated with increased protection from a parasite carried by the tse tse fly that causes African sleeping sickness. While protecting from one disease, the mutation – if inherited in both APOL1 genes – is more likely to lead to kidney disease in those of certain African descent, including people who identify as Black, African American, Afro-Caribbean or Latina or Latino.

In fact, an estimated 13% of Black Americans have two APOL1 gene mutations, according to the American Kidney Fund. While not everyone who has two APOL1 mutations will get kidney disease, there is a 1 in 5 chance they will go on to develop AMKD.

Identifying Symptoms
If you have kidney damage, symptoms may not occur until your kidneys are close to failing. As kidney damage worsens, one or more of these symptoms may occur:

  • Protein in urine
  • Swelling in legs or weight gain
  • Feeling weak or tired
  • High blood pressure

Should these symptoms occur and you have a family history of kidney disease, talk to a doctor about getting tested for kidney disease, as testing is the only way to determine kidney function. AMKD can cause damage to parts of the kidney that filter blood or, in some cases, cause cells in the kidneys to die, which can lead to damage and scarring that may eventually lead to kidney failure.

Getting a Diagnosis
The only way to know if you have APOL1 gene mutations is to do genetic testing via a blood or saliva sample. Genetic testing may be considered if you have kidney disease and don’t know the cause or if you’re considering donating a kidney. Testing may also be considered if a family member is a carrier for the mutation. If you have questions about genetic testing, discuss your options with a doctor or ask for a referral to a genetic counselor.

Taking Steps to Prevent Kidney Disease
There are currently no treatments available for AMKD. However, there are steps you can take to protect your kidneys and promote general health. Work with your doctor to create a plan to prevent or delay the progression of kidney disease, which may include:

  • Doctor visits to check how your kidneys are working through urine and blood tests
  • Checking for and managing diabetes and high blood pressure
  • A healthy eating plan, which may involve limiting things like sodium (salt)
  • Taking prescription medications as directed
  • Being active at least 30 minutes each day of the week
  • Quitting smoking or using tobacco

If you have the APOL1 gene mutations, you may be able to take part in clinical trials. Trials could provide an opportunity for researchers to develop and test safe treatments for AMKD. Also speak with family members about having genetic testing done if you have the mutation as they may also have it.

Learn more and find additional resources at kidneyfund.org/APOL1aware.

Photo courtesy of Shutterstock


SOURCE:
American Kidney Fund

Health

5 Ways Heart Health Care Can Improve

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(Family Features) Before the advent of antibiotics, infectious diseases, such as pneumonia, tuberculosis and diphtheria, were the most common causes of death in the industrialized world. Today, heart disease is the leading cause of death in the United States, and has been since 1921, according to the Centers for Disease Control and Prevention.

However, more than half of people in the U.S. (51%) aren’t aware of that fact, according to a Harris Poll survey conducted on behalf of the American Heart Association. What’s more, nearly half of all people in the U.S. (48.6%) have some type of cardiovascular disease (CVD), including coronary heart disease, heart failure, stroke or, most notably, high blood pressure, according to the annual statistical update, “2024 Heart Disease and Stroke Statistics: A Report of U.S. and Global Data From the American Heart Association,” published in “Circulation.”

“Heart disease along with stroke, which is the fifth-leading cause of death, claim more lives in the U.S. than all forms of cancer and chronic lower respiratory disease combined, based on the most recent data available,” said Joseph C. Wu, M.D., Ph.D., FAHA, volunteer president of the American Heart Association, director of the Stanford Cardiovascular Institute and the Simon H. Stertzer Professor of Medicine and Radiology at Stanford School of Medicine. “Finding that most people do not know the significant impact of heart disease is discouraging and even a bit frightening.”

While death rates from CVD have declined 60% since 1950 and the number of people in the U.S. dying from heart attack has dropped from 1 in 2 in the ’50s to about 1 in 8 today, challenges still remain.

In 2024, with Bold Hearts – the American Heart Association’s centennial celebration – the organization celebrates 100 years of progress and identified several issues that must be addressed to make the next century of life-saving work as impactful as the first 100 years:

  • Scientific literacy must be enhanced to increase public knowledge and understanding about the methods and interpretation of scientific data.
  • Non-traditional approaches to health care are needed to address the social and structural determinants of health by moving evidence-based approaches rapidly into communities to address food insecurity, transportation problems, education, housing, access to care, chronic psychosocial stress and other social needs.
  • The interconnectedness of organ systems, mechanisms of disease and stages of life are critical to understanding the role cardiovascular health plays in overall health.
  • Appreciation of systems of care will beimportant to achieving significant clinical benefits. Reliance on individual physicians may not be realistic in managing diseases involving multiple organ systems such as cardiovascular-kidney-metabolic disease or disorders affecting the heart, brain and mind simultaneously.
  • More funding for research is a critical need due to the pace of scientific advances. In the next century, laboratory experiments may demand more sophisticated equipment, translational science will incorporate expensive new technologies like artificial intelligence and population health will require greater computing power and larger sample sizes.

“There is much to learn from this historic shift in the reduction of deaths from infectious diseases and the current prevalence in deaths from cardiovascular diseases,” Wu said. “Through scientific research, technological advances and public health policy, most of these infectious diseases have become controlled, and many have been or are nearly eradicated. As we apply these same clinical and epidemiological methods to the someday hopeful eradication of heart disease and stroke, the American Heart Association is making great progress. Although still too many people die each year, many are living longer, more productive lives while managing their cardiovascular disease and risk factors.”

To learn more, visit heart.org/centennial.


SOURCE:
American Heart Association

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Promoting Mental Health Awareness: A Year-Round Commitment

“Join the movement for mental health awareness and break the stigma. Together, we can make a difference in supporting those in need. #MentalHealthAwareness”

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In today’s fast-paced and demanding world, mental health awareness holds unprecedented significance. By understanding the urgent need for mental health awareness and access to proper care, we can create a more empathetic and supportive society. This blog post emphasizes the importance of Mental Health Awareness Month and highlights ways individuals can contribute to this cause throughout the year.

@stmblog

Raise mental health awareness, break stigma. Together, we make a difference. #MentalHealthMatters #BreakTheStigma www.stmdailynews.com

♬ original sound – STMDailyNews

Breaking the Stigma:
Mental Health Awareness Month serves as a catalyst for open conversations about mental illness, aiming to dismantle the stigma surrounding mental health. Through education and awareness, we can dispel myths and misconceptions, enabling a more inclusive and understanding environment for those facing mental health challenges.

Supportive Initiatives:
During this significant month, a multitude of activities and events take place to show support for mental health. These include educational programs, workshops, community discussions, and fundraising efforts. Such initiatives provide individuals, families, and communities with valuable resources, information, and support networks.

Individual Contributions:
As individuals, we can make a remarkable impact in promoting mental health awareness. Educating ourselves about mental health conditions allows us to understand the experiences of those living with them, fostering empathy and compassion. By sharing our own experiences or supporting those who do, we can help break the silence and encourage others to seek help without fear of judgment.

Support and Empathy:
Offering support and empathy to those struggling with mental health conditions is crucial. By lending a listening ear, being there for someone, and checking in on their well-being, we create meaningful connections that alleviate feelings of isolation. Opening up honest conversations about mental health strengthens the support network, cultivating an environment where individuals feel safe seeking help.

Prioritizing Our Well-being:
In the pursuit of mental health awareness, it is essential to prioritize our own well-being. Practicing self-care, engaging in activities that bring joy and relaxation, and seeking help when needed are fundamental aspects of maintaining good mental health. By prioritizing our well-being, we become role models, fostering a culture that places as much value on mental health as physical health.

A Year-Round Commitment:
Mental Health Awareness Month serves as a reminder to carry the lessons learned throughout the year. By actively participating in mental health initiatives, advocating for equitable access to care, and supporting those facing mental health challenges, we create a society that genuinely values mental well-being. Let us work together to break down barriers, eliminate stigmas, and ensure that mental health is prioritized and addressed for all.


Mental Health Awareness Month acts as a rallying call to prioritize mental health and create a more compassionate and supportive society. By embracing the lessons learned during this month, we can contribute to the well-being of individuals, families, and communities throughout the year. Let us continue to educate ourselves, advocate for mental health, support others, and prioritize our own well-being, fostering an environment where mental health is celebrated and cared for. Together, we can make a difference.

What is Mental Health Awareness Month?

Since 1949, Mental Health Awareness Month has been observed in May in the United States. It is a time when various forms of media, local events, and film screenings are used to raise awareness about mental health. Mental Health America initiated this annual observance in the United States. (Source: Wikipedia)

Date: Wed, May 1, 2024 – Fri, May 31, 2024

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ELVIE PUTS MATERNAL SUPPORT UNDER A MICROSCOPE WITH NEW REPORT

Leading FemTech Pioneer’s “The Motherload: The weight of limited postpartum support” Survey Shows That Women Face a Trio of Serious Pregnancy & Postpartum Challenges

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NEW YORK /PRNewswire/ — Today, Elvie, the disruptive global FemTech health and wellness brand, releases “The Motherload: The weight of limited postpartum support,” their first-ever report, in partnership with Mother.ly, putting the state of maternal health under the microscope. The study of over 1,000 women with children has uncovered a trio of serious pregnancy and postpartum challenges that mothers currently face. 

Elvie: State of Maternal Health Report

As a female-founded and female-grounded company, Elvie has worked tirelessly to empower women through radical female-first technology that harnesses their incredible biology. The brand is taking this one step further with their newest report, partnering with Mother.ly to unveil research detailing the challenges mothers face when it comes to the fourth trimester, breastfeeding, pelvic floor health and mental health and the intersection between those and technology.

Based on the survey Elvie conducted in February 2024, mothers are finding that they can successfully turn to both family and technology to ease their challenges, but are often left wanting by doctors, employers and their political policy landscape. Findings from the study also uncover that while mothers expect postpartum challenges to occur, they’re often complicated by a lack of strong support and poor maternity leave policies.

“With this new research, we’re demonstrating something those mothers already know: postpartum care in the US is simply not good enough.” says Tania Boler, Founder & President of Elvie. “While they rely on and are comfortable with technology, whether it be a pump, ovulation tracker or pregnancy app, there’s an increase in frustration surrounding unexpected challenges and unknowns when it comes to their maternal health.

“Women are looking to feel as sure in their doctors as they are in their trusted technology. But today’s current maternal health issues – from lack of education and paid leave to physical and mental challenges – are having a tremendous impact on how women navigate both the pre- and post-natal landscape. Better medical, social, and governmental aid are crucial to empower the women raising the next generation.”

Enlisting one of the brand’s largest innovative marketing strategies, Elvie is unveiling their first-ever billboard in Times Square timed to the release of the report, doubling down on its commitment to women and postpartum challenges they face. The billboard’s creative will include an animation flipping through a variety of words relating to challenges that the majority of women in the report faced such as “Baby Blues,” “Bleeding,” “Loneliness,” “Breastfeeding,” and more, to bring to life the often undiscussed issues discussed in the report.

The billboard, as well as additional marketing channels, will lead back to a landing page for the maternal health report featuring different modules of the survey’s findings with a call to action for consumers to download the report and “mama’s game plan,” which includes educational content surrounding fourth trimester challenges.

CHALLENGING SURPRISES – WITH LIMITED SUPPORT

Majority of new moms feel more prepared to use postpartum technology than to deal with lack of sleep, finding breastfeeding to be the biggest postpartum challenge, alongside untreated pelvic floor issues and compounded mental health & physical health challenges.

Boobie Trapped

  • 83% report breastfeeding for at least 1 month.
  • Breastfeeding or pumping (74%) is the most common need in the postpartum health journey after sleep (82%).
  • The single biggest misconception about postpartum care: thinking breastfeeding would be easier (48%).
  • 84% of moms experienced at least mild breast feeding complications after giving birth; 27% had severe complications.
  • Almost as many mothers stop breastfeeding due to the challenges of breastfeeding than due to natural reasons. 42% stop because of return to work constraints, lack of support, difficulty balancing breastfeeding with other duties, sleep issues, mental health issues, or pain/discomfort. 56% stop because of insufficient supply, a transition to solids, or the baby deciding it’s time.

Let’s (Not) Talk About Pelvic Floor

  • A 56% majority did kegels or pelvic floor exercises before having a baby, but 79% still experienced at least mild pelvic floor issues after giving birth.
  • Only 31% were satisfied with the level of pelvic floor treatment offered after giving birth.
  • Just 19% spoke about their pelvic floor health often with their healthcare provider during their postpartum phase.

Mental vs. Physical

  • 77% of moms experienced at least mild mental health complications after giving birth.
  • Of these, 20% had severe mental health complications.
  • Only 28% say they had good mental health during the postpartum period, but only 31% had professional mental health support.

It’s All About Family

  • 94% felt supported by their partner during their pregnancy experience, and 90% felt supported by their partner during the postpartum experience.
  • 83% considered their partners/family to be supportive to their mental health during their experience.
  • By contrast, only 14% said they felt partner/family support was needed but missing.

WE GET TECHNOLOGY, BUT WHAT ARE THE RULES?

Most women understand and rely on technology for postpartum recovery support more than the support from their doctors, but are confused by and lack awareness of postpartum policy solutions.

Technology is Queen

  • 97% relied on technology to support their postpartum recovery. Electric breast pumps (72%) are the most common technology mothers turned to after baby monitors (75%)
  • 75% relied on technology to support their prenatal phase. Smartphone apps (57%) are the most commonly-used technology.
  • 81% say tech products and services made their motherhood journey easier.
  • 68% agree that the tech products/services they used for prenatal and postnatal care played an important role in supporting them. 67% say their tech products were always reliable and 74% say they were well-designed.
  • 26% say the access they had to smart technology, products and services was the most valuable support they received, statistically tied with professional healthcare support (28%).
  • 82% of moms who had access to high tech breastfeeding products say they were effective. By contrast, 77% of those who used a lactation consultant rate the service as effective.
  • 58% felt prepared to take advantage of available tech solutions after their pregnancy, significantly more than the level of preparation for breastfeeding, sleep challenges, childcare and relationship challenges.

What Are The Rules?

  • Only 21% are very familiar with their state’s maternity rights.
  • Only 30% know what the “Pump Act” covers.
  • Most mothers recognize breastfeeding rights, including:
    • 89% the right to a private space (not a bathroom) at work.
    • 84% the right to a break at work long enough to pump.
    • 81% the right to breastfeed in public.
    • 67% believe they have a right to a free electric breast pump.

UNSUPPORTIVE COMPLICATIONS

While mothers understand that postpartum challenges are guaranteed, they’re often complicated by a lack of strong structural support and poor paid maternity leave policies. 

Time Out & Time Off

  • Only 16% expected an easy/quick recovery in the postpartum period, and only 25% felt prepared for this phase as a result of their prenatal care.
  • Only 25% of moms who experienced severe complications predicted they would have significant physical or emotional difficulties in the postpartum period.
  • Only 23% felt very supported by their doctor, midwife, or other healthcare provider.
  • Postpartum challenges were exacerbated by lack of paid maternity leave, which was only available to 59% of moms (64% of those who work full time and 24% who do not)
    • 60% took less than 2 months of paid maternity leave
    • 72% of moms with severe complications were still back to work within 6 months

About Elvie
Elvie is a disruptive global women’s health and wellness brand which uses smart technology to create superior products for women. Founded in 2013 by Tania Boler, Elvie brings together a team of world-class engineers, designers and business minds to develop extraordinary products that improve women’s lives — revolutionizing categories which had been overlooked for many years, including breastfeeding and pelvic floor health.

The first to launch, Elvie Trainer, is an award-winning Kegel trainer and connected app that allows women to take charge of their pelvic floor with expert-designed care from home. Elvie’s second product, Elvie Pump, is the smallest, quietest and smartest (and only Piezo-Powered™) wearable breast pump. Slipping discreetly in-bra, moms can pump, hands-free, whenever and wherever they want.

Elvie now has six products on the market, and continues to expand its product line and innovate new solutions for more women to have access to products that work smarter and harder for their bodies.

In 2021, Elvie launched Elvie Stride, a hands-free, hospital-grade electric pump that allows mothers to express on-the-go without compromising on pumping performance. Stride Plus launched six months later, featuring the award-winning Elvie Stride breast pump, along with a 3-in-1 Carry Bag that includes a wet bag for mess-free travel, and a cool bag and ice pack to keep breast milk fresh. Elvie Curve and Elvie Catch both work to enhance the Elvie breastfeeding range – Elvie Curve is a manual, silicone in-bra breast pump that uses natural suction to optimize milk output, and Elvie Catch is a set of two secure milk collection cups that replace the need for single-use breast pads.

For more information visit www.elvie.com.

SOURCE Elvie

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