AGING IN AMERICA: REVIEW FROM SOCIETAL TO BIOCHEMICAL

PART 1: ALZHEIMER’S DISEASE- A GLOBAL EPIDEMIC  Written By: Roberta Kline, MD  (Originally published in Journal of Diagnostic Science,©2024)

Age-related dysfunction of the brain can escalate in aggressiveness and complexity over time as the victim progresses toward the end of life.  ALZHEIMER’S DISEASE (AD) is currently viewed as a progressive neurodegenerative disease that is uniformly fatal. The most common form is termed Late-Onset Alzheimer’s Disease (LOAD), which primarily impacts people over the age of 65 and is the focus of this article. In addition to its devasting impact on individuals with AD, it has a wide-reaching impact that touches every aspect of our society.  But there is hope. In the following pages, we’ll review the current state of the science and clinical approaches to AD, and introduce promising new ways to approach prevention and treatment. Making these changes will require a fundamental shift in how we approach not only AD but our health and healthcare as a whole. 

All stakeholders must work together to change the tide in this global epidemic. From individuals, families, and communities to healthcare, research, and private and government institutions, we all have the opportunity to be part of the solution. It won’t be easy, but to keep going in the same direction is unthinkable.

ALZHEIMER’S DISEASE WILL BANKRUPT HEALTHCARE
Without a drastic – and rapid- change in our approach, caring for people with dementia, particularly Alzheimer’s disease, is predicted to bankrupt this country’s healthcare systems by the year 2050.  Currently, we spend more than $321 billion in direct healthcare costs caring for the more than 6 million Americans living with Alzheimer’s. In large part due to the increase in our aging population, that number is expected to increase to 13.8 million, with costs projected to be over $1 trillion by 2050. [1] Evidence shows that taking a more holistic approach can improve quality of life [2 but this requires a different mindset and strategy. In addition to the staggering cost of healthcare, there is a hidden cost that often fails to receive attention: unpaid caregiving. 

More than 11 million unpaid caregivers spend an estimated 18.4 billion hours a year caring for family members with Alzheimer's or other dementias. The value of these unpaid services is estimated at $350 billion [2], exceeding the direct healthcare costs. However, this number is even greater in terms of total impact, as it does not account for the emotional, physical, and social toll, nor does it include lost wages and related benefits due to caregiving responsibilities. 

A DISEASE OF AGING
Alzheimer's disease is fatal and is the fifth‐leading cause of death among Americans aged 65 and older. [3] This number does not include those with Alzheimer’s who die of other diseases first, but where Alzheimer’s was likely a contributing factor. While people aged 65 and older only survive an average of four to eight years after diagnosis, some can live as long as 20 years. [3] 

Twice as many women as men are diagnosed with Alzheimer’s disease, and women account for almost 2/3 of the approximately 7 million Americans currently living with Alzheimer’s. [3e] Ethnicity also plays a role. Black/African American individuals have twice the risk of Alzheimer’s disease compared to Non-Hispanic white individuals, and Hispanic/Latino individuals are just slightly lower at 1.5x. [4] 

When looking at people 65 and older, the highest prevalence of AD is among Black/African American individuals at 13.8%, with Hispanic/Latino individuals at 12.2%, non-Hispanic white individuals at 10.3%, American Indian and Alaska Native individuals at 9.1%, and the lowest group being Asian American and Pacific Islander individuals at 8.4%. [4] The U.S. Census Bureau has predicted that the U.S. minority population will increase from 20% to almost half by 2060. Despite these statistics, most research has been conducted with non-Hispanic white populations, hampering both understanding of underlying causes as well as treatments for an increasing demographic. There are currently no good treatments in the conventional medical model, and thus people with Alzheimer’s are often led to believe that there is nothing they can do. Ending up in a nursing home often seems inevitable.

NURSING HOME VS HOME CARE
According to the CDC, as of 2020 there were more than 15,000 nursing homes serving more than 1 million residents, and for-profit companies owned 70%. [6] One of the top three reasons older people are placed in assisted living facilities and nursing homes is dementia, with Alzheimer’s being the most common type and accounting for almost half of all nursing home residents; this rate is even higher for Medicare beneficiaries. As people with Alzheimer’s disease age, they are often found to have other forms of dementia as well. [3]

Research shows that those who are in nursing homes do better when provided with more specialized services. However, less than 5% of nursing home “beds” are in facilities that provide these. [6] But nursing home care is not inevitable. More than 60% of people with Alzheimer’s disease and related dementias live at home, half of them living alone.  [6] This concept of “aging in place” may help alleviate the burden of nursing home care. It also can help slow the progression of the disease, as people are kept in familiar environments that provide a sense of belonging and purpose. This continued connection to their community also provides better opportunities for social and cognitive engagement.

Living at home requires aids and adaptations, as well as caregiver support. This brings up another challenge: “Who provides the support?” How we treat the elderly reflects our societal values. With an overemphasis on achievement and productivity, those unable to meet this standard are seen as “less important” and thus less valuable. Often, this intersects with traditionally female roles, including caretaking for the elderly, children, and those who are sick, infirm, or disabled. 

As women are often the primary caregivers, they are much more likely to disproportionately suffer additional consequences. Women from historically minority and marginalized groups with fewer resources and access to services are even more impacted. [3]

Age distribution of AD in 2023. [3]

LEADING CAUSES OF ALZHEIMER’S DISEASE
Alzheimer’s disease is a complex interplay of genetic and environmental factors. 

1. AGE: Age is the single largest risk factor for AD. The vast majority (90-95%) of people with AD are over age 65, with risk increasing with age. 

2. GENETICS: Specific forms of the APOE gene are associated with late onset Alzheimer’s disease (LOAD), the most common type that typically affects individuals after age 60. People carrying the E4 variant of the APOE gene have the largest genetic risk, based on research involving individuals primarily of European descent. Those with two copies of the APOE4 gene are estimated to have about a 60% risk of developing AD by age 85, and recent research suggests that the form of disease may be different than AD in those with normal APOE genes. [7] 

Interestingly, this study also found that almost everyone with two copies of APOE4 developed brain changes in beta-amyloid and tau consistent with Alzheimer’s Disease by age 55. But previous studies have estimated that almost half—40%—of people with two copies of APOE4 don’t develop Alzheimer’s disease, so it’s not necessarily inevitable. [8]

Variants in genes regulating the inflammatory response have been implicated in AD. In 2013, a variant in the TREM2 gene was found to account for the next highest risk after APOE4. [9] Recently, a variant in the FMNL2 gene appears to link the connection between vascular disease in the brain with Alzheimer’s disease by reducing the clearance of amyloid in the brain. [10]

Research has revealed a number of other gene variants that are associated with AD more specifically in individuals with African heritage. Variants in genes linked to the immune response, and vascular systems were found to account for up to 30% of the heritability of AD in Black Americans. [11] A different APOE variant on APOE3, normally thought to be protective, was associated with an increased risk for African Americans if they also carried APOE4. New gene variants in ABCA7 have an even greater impact on AD risk for individuals with African ancestry vs European ancestry. [12] It is likely that ongoing research will continue to refine the genetic contributors for various populations, increasing our understanding of the disease and potential treatments.

We can’t change our genes, but they are not the only cause. While approximately 60% of patients with AD have APOE4 or other identifiable genetic risk factors, 40% don’t. [13] This is likely due to a combination of other genes that have recently been identified, along with dietary, lifestyle, and environmental factors. [8]

As with many other chronic diseases, this illustrates the importance of understanding how the interactions between our genes and environment can increase or decrease genetic predisposition for disease. These insights are crucial to finding clues that may help accelerate better options for treatment and even prevention. 

3. EPIGENETICS: Epigenetics involves changes that affect gene expression without changing the DNA sequence. It is the body’s ability to quickly respond to environmental factors, and has been identified as a significant contributing factor to many health issues including Alzheimer’s Disease. [14] It is one of the mechanisms by which diet and lifestyle factors impact genetics and contribute to AD – and how we can also leverage them to potentially reverse these processes.

4. ACCUMULATION OF BETA-AMYLOID AND TAU: The prevailing theory of why people develop Alzheimer’s Disease has been focused on the role of specific protein alterations in the brain called beta-amyloid plaques and, more recently, tau neurofibrillary tangles. While these changes are thought to be the hallmark of AD in the brain, the limited focus on this “amyloid hypothesis” ignores scientific research into other biological mechanisms that contribute to the disease process.

Scientific research is shedding light on the complexity of Alzheimer’s disease that goes far beyond beta-amyloid plaques and tau protein tangles. In fact, these changes are now thought to be a result of the underlying biological mechanisms that can lead to AD - which likely explains why pharmaceutical companies have pursued treatment without much success. [9]

This single-minded focus on the amyloid hypothesis, excluding other theories that challenged this accepted dogma, has significantly contributed to the lack of progress in finding treatments. [9] As a result of this and other biases, Alzheimer’s Disease research has been grossly underfunded compared to other chronic diseases such as heart disease and HIV. 

But even the funds invested have failed to deliver significant progress. Despite spending over $40 billion on drug development over the last 25 years, the FDA has approved only a handful of medications that are woefully inadequate in improving symptoms and disease progression. [15] None address the underlying causes and we have no cure. 

Clearly, we need a different approach. Fortunately, dedicated scientific researchers have been making significant headway in understanding the underlying causes and exploring innovative approaches to treatment. With appropriate funding, these lay the foundation for more fruitful results that also address inequities in research and treatment access.

5. NEUROINFLAMMATION: Inflammation in the brain has been associated with several neurodegenerative diseases, of which Alzheimer’s Disease is the most common. [16] In AD, this involves specialized cells in the brain called microglia. Damage to these microglia leads to dysfunction and degeneration of neurons, which then creates a circular cascade of more inflammation and more damage to mitochondria and neurons. [17] 

Cytokines and the inflammasome are a central part of the neuroinflammatory process, activating numerous cascades that increase the pro-inflammatory response and deposition of beta-amyloid plaques that damage neurons.. [9]

Various toxins as well as microbiological agents including viruses, prions, parasites, and bacteria have also been associated with triggering an inflammatory response and the development of AD. [18]

 

(L Image): Piekut et al. Fig. 1. The pathomechanism of virus-associated neurodegeneration. Herpes simplex virus 1.

6. MITOCHONDRIAL DYSFUNCTION: Maintaining healthy mitochondria is essential for biological functions, including in the brain. Mitochondria have been implicated in the development of many age-related diseases, including Alzheimer’s disease (AD). [19] Mitochondria are considered the powerhouses of our cells, producing the energy we need to live in the form of ATP. Due to lack of energy stores in the brain for fat and glucose, which typically fuel cells, the mitochondria must produce the energy needed. Dysfunction of mitochondria has an outsized impact on the brain due to the high energy requirements of the neurons and glia. [19]

One of the mechanisms by which mitochondrial function is affected is through the connection of inflammation and oxidative stress – two biological responses that go hand in hand. The mitochondria create oxidative stress as part of the normal process of ATP production. In the face of excess energy demand, including inflammation, the level of oxidative stress can exceed the normal antioxidant mechanisms and lead to damaged mitochondria.

Another consequence of inflammation and oxidative stress is the disruption of normal maintenance that includes the ability to destroy old or damaged mitochondria, as well as generate new ones. This process of mitochondrial autophagy and biogenesis has been found to be related to aging and the progression of Alzheimer’s Disease. [16]

7. VASCULAR DISEASE: Alzheimer’s disease is associated with cardiovascular and cerebrovascular disease, associated with beta amyloid plaques and neurofibrillary tau tangles in up to 70% of people with Alzheimer’s disease. [10] When blood vessels become diseased, blood flow to the brain is restricted, causing neuronal cell death. This leads to a circular cascade of inflammation and oxidative stress, and further damage to neurons in the brain.

Many diseases are associated with increased cardiovascular risk, including obesity, hypertension, hypercholesterolemia, diabetes, and metabolic syndrome. Each of these is also associated with inflammation and oxidative stress as well as mitochondrial dysfunction. It is likely a combination of the various factors, in addition to vascular dysfunction, that connect them with Alzheimer’s disease risk. 

MODIFIABLE RISK FACTORS: With all of these significant contributors to Alzheimer’s disease, it’s important to remember that we have some control over many risk factors - and they are thus potentially modifiable.  The brain is an incredibly complex organ, and we need to reframe our reductionist thinking to approach the brain as an evolving, complex network that adapts to biological, social, and environmental influences to create a better approach to diseases such as Alzheimer’s disease. 

It is estimated that 40% of AD is related to modifiable risk factors [3], including:

• insulin resistance                            • glucose dysregulation

• hypertension                                    • dyslipidemia

• obesity                                            • physical inactivity

• hearing loss                                    • smoking

• alcohol                                            • traumatic brain injury

• low levels of socialization and cognitive stimulation

• air pollution     

These are all potential areas where we can improve both prevention and treatment and understand the protective mechanisms that may explain why some people don’t get Alzheimer’s disease despite multiple risk factors – including genetics. 

R-Image: Nday, CM et al Understanding the biological and neurological mechanisms behind resilience.

EARLY DETECTION: Currently, there is no treatment to effectively cure Alzheimer’s, and the more the disease has progressed, the more difficult it is to slow progression or even reverse course. 

Early detection is a crucial component to reducing morbidity and mortality from many diseases, and this needs to be extended to Alzheimer’s Disease. It is evident that metabolic and brain changes can start 20 years or more before symptoms appear. New blood tests are emerging that may help us identify people with very early changes in brain biology – long before symptoms appear. [19] Having this information early may help to develop strategies to slow or even reverse them before a person ever develops symptoms of Alzheimer’s Disease. 

Diabetes, high cholesterol, and high blood pressure are some of the most common diseases that predispose to Alzheimer’s Disease [19], and these also have altered metabolic and cellular changes that can be seen years or even decades before diagnosis. Here, too, early detection enables addressing these earlier in the disease process and can contribute to improving our approach to Alzheimer’s Disease as well. [20] While conventional medicine does not effectively address the root causes of these diseases, Personalized Genomic & Functional Medicine has been shown to do just that – especially if addressed early. 

In Part 2 of this series, we’ll look at ways in which we already have many of the tools we need to make a difference in the treatment and potential prevention of Alzheimer’s disease today. 

 

DR. ROBERTA KLINE is an ObGyn physician, an award-winning author, an educational advocate, and an inspirational speaker for the professional and women’s communities. She holds a combined mission to upgrade how we approach health and deliver healthcare for women through education, globalized communication, research, and advocacy.  Dr. Kline develops and teaches CME programs, consults on gene expression project designs, and leads collaborative projects designed to advance the direction of women’s health. She is also a clinical advisor in integrative medicine and functional genomics to many health organizations including the Integrative Health Research Center. Dr. Kline is Director of Educational Programs for the Women's Health Collaborative, Editor of the Women’s Health Digest, and on faculty at the University of Western States.

REFERENCES

1. Skaria AP. The economic and societal burden of Alzheimer disease: managed care considerations. Am J Manag Care. 2022 Sep;28(10 Suppl):S188-S196. doi: 10.37765/ajmc.2022.89236. 

2. Gaugler JE, Yu F, Davila HW, & Shippee T. (2014). Alzheimer’s Disease And Nursing Homes. Health Affairs (Project Hope), 33(4), 650. https://doi.org/10.1377/hlthaff.2013.1268

3. 2024 Alzheimer's disease facts and figures. Alzheimers Dement. 2024 May;20(5):3708-3821. doi: 10.1002/alz.13809. 

4. Lim, Aaron C., et al. "Quantification of Race/Ethnicity Representation in Alzheimer’S Disease Neuroimaging Research in the USA: A Systematic Review." Communications Medicine, vol. 3, no. 1, 2023, pp. 1-12, https://doi.org/10.1038/s43856-023-00333-6. 

5. https://www.cdc.gov/nchs/fastats/nursing-home-care.htm

6. Mukamel DB, Saliba D, Ladd H, Konetzka RT. Dementia Care Is Widespread In US Nursing Homes; Facilities With The Most Dementia Patients May Offer Better Care. Health Aff (Millwood). 2023 Jun;42(6):795-803. doi: 10.1377/hlthaff.2022.01263. 

7. Fortea J, Pegueroles J, Alcolea D, et al (2024). APOE4 homozygosity represents a distinct genetic form of Alzheimer’s disease. Nature Medicine, 30(5), 1284-1291. https://doi.org/10.1038/s41591-024-02931-w

8. Steele OG, Stuart AC, Minkley L, et al. A multi-hit hypothesis for an APOE4-dependent pathophysiological state. Eur J Neurosci. 2022 Nov;56(9):5476-5515. doi: 10.1111/ejn.15685. 

9. Si, Zhen, et al. "Targeting Neuroinflammation in Alzheimer’S Disease: From Mechanisms to Clinical Applications." Neural Regeneration Research, vol. 18, no. 4, 2023, pp. 708-715, https://doi.org/10.4103/1673-5374.353484.

10. Lee, A.J., Raghavan, N.S., Bhattarai, P. et al. FMNL2 regulates gliovascular interactions and is associated with vascular risk factors and cerebrovascular pathology in Alzheimer’s disease. Acta Neuropathol 144, 59–79 (2022). https://doi.org/10.1007/s00401-022-02431-6

11. Benjamin, Kynon J., et al. "Analysis of Gene Expression in the Postmortem Brain of Neurotypical Black Americans Reveals Contributions of Genetic Ancestry." Nature Neuroscience, vol. 27, no. 6, 2024, pp. 1064-1074, https://doi.org/10.1038/s41593-024-01636-0.

12. Stepler KE, Gillyard TR, Reed CB, Avery TM, Davis JS, Robinson RAS. ABCA7, a Genetic Risk Factor Associated with Alzheimer's Disease Risk in African Americans. J Alzheimers Dis. 2022;86(1):5-19. doi: 10.3233/JAD-215306.

13. Fernandez F, & Andrews JL. (2020). Genetics of dementia: A focus on Alzheimer's disease. Diagnosis and Management in Dementia, 127-146. https://doi.org/10.1016/B978-0-12-815854-8.00009-4.

14. Sharma, Vivek K., et al. "Alzheimer’S Disorder: Epigenetic Connection and Associated Risk Factors." Current Neuropharmacology, vol. 18, no. 8, 2020, pp. 740-753, https://doi.org/10.2174/1570159X18666200128125641

15. Harrison J, Mitchell SL, McCarthy EP, & Mor V. (2024). Pragmatic Clinical Trials for Dementia Care: Experience from the First 5 Years of the IMPACT Collaboratory. Generations (San Francisco, Calif.), 48(2). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11429579/

16. Tran M, & Reddy PH. (2021). Defective Autophagy and Mitophagy in Aging and Alzheimer’s Disease. Frontiers in Neuroscience, 14, 612757. https://doi.org/10.3389/fnins.2020.612757

17. Marttinen M, Takalo M, Natunen T, et al. (2018). Molecular Mechanisms of Synaptotoxicity and Neuroinflammation in Alzheimer’s Disease. Frontiers in Neuroscience, 12, 427638. https://doi.org/10.3389/fnins.2018.00963

18. Piekut T, Hurła M, Banaszek N, Szejn P, Dorszewska J, Kozubski W, Prendecki M. Infectious agents and Alzheimer's disease. J Integr Neurosci. 2022 Mar 28;21(2):73. doi: 10.31083/j.jin2102073.

19. Misrani, Afzal, et al. "Mitochondrial Dysfunction and Oxidative Stress in Alzheimer’S Disease." Frontiers in Aging Neuroscience, vol. 13, 2021, p. 617588, https://doi.org/10.3389/fnagi.2021.617588.

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BRAIN FOG Explained- and What Can be Done about It

 

Welcome to Health Resource Digest. One of our newest projects is looking at brain health. Marilyn Abramson has just written an amazing article talking about the basics of why people get brain fog post covid, and some really simple strategies that they can do to improve how their brain functions as they recover and try to get back to work and normal activities. 

In our article, Marilyn talks about the role of inflammation in the brain and how the changes induced by Covid can actually reduce the blood flow that our brain needs to function. And so these two components can really be a major part of the brain fog that people experience post-Covid. Now, some people experience very mild brain fog and it results very quickly, but other people are impacted for months and sometimes even longer than that. As we're now finding following people farther out from their Covid infections, this can really impact their ability, not just in their daily activity, but in their work. 

So one of the things I like about this article is that Marilyn has given some really simple tools that can be very effective in learning how to manage your brain, how to work with your brain, the way it is functioning as a result of Covid-19 infections, to help you be better organized and more focused. Not having to wait for this to resolve using other health strategies. So I like it because it really helps people in the moment, uh, as they're doing other strategies to try and improve what's going on in their brain.

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Written by: Marilyn Abrahamson, MA,CCC-SLP - CBHC

For some, Post-Covid brain fog can cause everyday cognitive tasks to be more difficult, causing the thought of returning to work to become daunting. Among the many symptoms of Long Covid, one study suggests that up to 80% of Covid-19 survivors suffer from neuropsychological symptoms such as memory impairment, attention deficit, executive dysfunction, difficulty with word finding, multitasking, and impaired visual/spatial skills. These are skills people need to properly perform their jobs, and without these skills, people can become overwhelmed by the smallest tasks.

Another study specifically measured the effects of brain fog on quality of life (QoL) at work. It showed that QoL at work was reduced for over 75% of study participants continuing to experience brain fog symptoms. There were many symptoms included under the umbrella term brain fog, however, in this study, memory problems and difficulty with multitasking had the most significant impact on QoL at work.

With this in mind, many employers are now being asked to help by making accommodations that include delaying deadlines, allowing more flexible work schedules, and reducing workloads.

HOW AND WHY COVID-19 CAUSES BRAIN FOG SYMPTOMS

Researchers have discovered multiple causes of persistent neurocognitive symptoms after having Covid-19.  Three of the most common are as follows:

● NEUROINFLAMMATION: Increased levels of inflammatory cytokines (molecules produced by the immune system that help the body fight infection) have been found within the brain for weeks after a bout with Covid-19. When the immune system becomes uncontrolled, it can cause increased inflammation in the brain, resulting in poor communication between the brain cells and nerve pathways, causing the brain to feel foggy and slow.

● REDUCED OXYGEN AND BLOOD FLOW TO THE BRAIN: Covid-19 is primarily a respiratory virus and can cause hypoxia (reduced levels of oxygen) in some patients. This reduction of oxygen and blood flow to the brain can result in a metabolic disturbance, disrupting the connection between brain cells and the blood vessels that supply them with nourishment. Imaging studies showed the same metabolic changes in both the brains of patients who had suffered from hypoxia as well as those with Long Covid brain fog symptoms. Notably, this is also a similar mechanism for lingering cognitive symptoms after traumatic brain injury.

● DISTRACTION CAUSED BY THE PRESENCE OF OTHER LINGERING SYMPTOMS: This is not exclusive to Covid-19, but the symptoms of brain fog can be partially attributed to associated symptoms such as acute or long-standing bouts with headaches, fatigue, and body aches. The presence of any type of physical discomfort or emotional upset can make cognitive tasks more difficult due to distraction, causing the lack of attention, focus and concentration.

HOW TO COPE WITH SYMPTOMS

If brain fog symptoms are significantly affecting work performance, deep cognitive testing can be performed by a neuropsychologist (SLP). Evaluation and treatment for cognitive symptoms can also be offered by a speech-language pathologist. Treatment by an SLP will likely include brain exercises as well as instruction in compensatory strategies for memory and attention. There are also brain-healthy habits people can engage in on their own.

● Exercise is key. Both aerobic exercise and strength training are important for brain health.

● Puzzles or brain training apps like Brain HQ can be helpful.

● Try to get 7-8 hours of good quality sleep each night.

● Eat a brain healthy diet high in monounsaturated fats, plant protein, whole grains, and seafood.

● Stay connected with others and socialize often.

● Try mindfulness and meditation to help reduce stress and improve focused attention.

● Learning and using both internal and external memory strategies. There are strategies for name recall, remembering lists and reminders, organizational systems and calendar management. These are compensatory strategies that help people work around the part of their brains that are not working as well as they did before.

● Pacing oneself. If fatigue sets in, it can cause more fogginess. Taking a break is the best way to reset and recharge.

● Aside from seeing their personal physician, consulting a mental health professional is crucial if a person is experiencing mood changes or depression. 

SURVIVOR STORES: "Silenced No More: The Endometriosis Warrior's Battlecry"

 Written by: Ciji Castro

For three decades, I have battled the silent monster within-- endometriosis. It started at the young age of nine when my first period marked the onset of a tumultuous relationship with my own body. What followed was a labyrinth of surgeries, treatments, and trial drugs, each peeling away parts of me, leaving behind battle scars that narrate a tale of resilience and fortitude.

pre-op photo taken right before last major
excision surgery and total hysterectomy

Endometriosis has spared no organ within me; it afflicted not only my uterus, ovaries, and fallopian tubes but also my appendix, bladder, ureters, colon, rectum, and cervix, potentially encroaching on my lungs. Despite the excruciating agony that became my constant companion, I was met with dismissive remarks, such as overreacting, having a low pain tolerance, being a hypochondriac, or worse, my test results being "normal," and there was nothing "wrong" with me.

Little did they know that beneath my happy, outgoing persona lay a warrior battling stage four endometriosis, armed with a pain threshold that masked the torment within. Post-surgery, I would wake up in recovery, walk to the bathroom on my own, and recover with nothing more than ibuprofen.

Amidst the labyrinth of myths and misconceptions, I was fed lies disguised as hope-- a promise that pregnancy could cure my Endo, that a hysterectomy would be the end of my Endo, and that menopause would usher in an era of long-awaited respite. Yet, each falsehood only fueled my determination to shatter the silence surrounding this nonsensical, mysterious disease.

To those facing their own battle with endometriosis, I urge you to fight fiercely and advocate for yourself. Your voice matters, your pain is real, and your journey is valid. Don't let dismissive attitudes or misconceptions deter you from seeking help and support. Educate yourself, speak up, and don't be afraid to contradict medical professionals who do not specialize in endometriosis or even mention that they "just looked it up"... because, yes, that happens. Never hesitate to demand the care and understanding you deserve, stay resilient, stay determined, and stand in your power. You are not alone in this fight.

As an ambassador for the Endometriosis Foundation of America, my mission transcends mere advocacy; it embodies a fervent dedication to enlighten the masses. I strive to empower today's youth with knowledge, equipping them to navigate a medical landscape where endometriosis languishes in obscurity. I engage in conversations with families, encouraging them to talk to their children about Endo with sensitivity and candor, all while nurturing a culture of understanding and empathy. Together, I hope to break the silence surrounding endometriosis and pave the way for a future where women's health is taken seriously. We are warriors, and our voices can spark change: change in funding for research, change in more medical professionals taking an interest in endometriosis, and change in the care we, as patients, receive.

Until then, I stand resolute, a beacon of strength for those who walk the same arduous path, a voice that reverberates through the silence, echoing the unwavering resolve of a warrior undaunted by the shadows of the pain and uncertainty in my journey with Endo.

---

CIJI CASTRO

Domestic Gourmet, Content Creator, Restaurant Guide, Activist

Ciji Castro, also known as Domestic Gourmet, is the CEO and Executive Chef behind a line of organic Spanish cooking staples. As a mom of three girls, she is passionate about teaching them about endometriosis. Ciji is an ambassador for the Endometriosis Foundation of America and lends her voice to the character of Maya's mom in the animated show featured on the ENPOWR Project. Look out for her upcoming products, achiote oil and spices, launching later this summer. Combining her culinary expertise with advocacy work, Ciji is making a difference in both the food industry and in raising awareness about women's health issues.

e consult your healthcare professional about potential interactions or other possible complications before using any product.

THE 2024 ENDOMETRIOSIS RESOURCE GUIDE (download now) Dr. Roberta Kline, women's health and genomics specialist presents this supplemental workbook from her presentation at the 15th Annual Endometriosis Foundation Patient Conference in NYC. "To address endometriosis more effectively, we first need to understand what causes it. And it turns out it's not so simple. Endometriosis is a complex disease, which means that there is no single cause and no single answer. What's exciting is that genetic expression research is providing many clues, opening up new opportunities for better diagnostics, earlier detection, and more effective treatments because they're addressing the root causes. While you can’t change your genes, you CAN influence how they get expressed and thus affect your health. In this Endometriosis Resource Guide, you’ll learn simple strategies to optimize your body’s own biology. It’s a powerful tool to help you regain some control back from a disease that all too often feels like it’s controlling you".

Disclaimer: The information (including, but not limited to text, graphics, images and other material) contained in this article is for informational purposes only. No material on this site is intended to be a substitute for professional medical advice or scientific claims. Furthermore, any/all contributors (both medical and non-medical) featured in this article are presenting only ANECDOTAL findings pertaining to the effects and performance of the products/technologies being reviewed - and are not offering clinical data or medical recommendations in any way. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen, never disregard professional medical advice or delay in seeking it because of something you read on this page, article, blog or website.

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Under a joint report with the Women's Diagnostic Network and HealthTech Reporter, our editors met with Ms. MJ Smith, a clinical ambassador from Screen Point Medical (breast imaging AI) at the 2023 NYC Roentgen Society conference. At the height of the medical conference, we found MJ to be a uniquely profound and engaging speaker about women's health topics.  Exploring a private connection opened us into a collaborative and educational journey befitting our UNDERDIAGNOSED WOMEN series where MJ is truly a life-long supporter of diagnostic care, innovation and non-invasive options.

Endometriosis (sometimes called "endo" for short) is a common health problem in women that is reported to affect more than 11% of American women between 15 and 44. It gets its name from the word endometrium, the tissue that normally lines the uterus or womb. When this tissue is found in locations outside of the uterus, it is called endometriosis. Most often this involves the nearby organs and tissues – ovaries, fallopian tubes, outer surface of the uterus, bladder, bowel and rectum. It can also be found in other locations including the vagina, cervix, vulva, or even distant tissues such as the lungs, brain, eye, and skin. Just like the lining of the uterus, this tissue responds to cycling hormones to grow. But unlike normal endometrium, it is not limited to the surface and does not shed. Because of this, it builds up and creates inflammation, scarring, and other changes that contribute to the most common symptom: pain. 

While endometriosis is most often diagnosed in women in their 30s and 40s, it likely develops much earlier. Due to the wide range of symptoms that women can experience, and lack of effective and noninvasive diagnostic tools, women often suffer for years or even decades. Currently the only accepted way to diagnosis endometriosis is to directly visualize and biopsy the lesions with surgery. This is limiting for two reasons. First, endometriosis has to be considered as a possible explanation for symptoms that are often seen as “normal” for menstruating women. Second, the risk of not knowing has to outweigh the risk of potential complications of invasive surgery. 

Endometriosis can also make it harder to get pregnant, and it is not uncommon for a diagnosis to be made only as part of evaluation or treatment for infertility. Getting a diagnosis to explain symptoms is only the first step in addressing endometriosis, however. There is no cure, and most current treatments often come with significant risks or side effects but do not fully resolve a woman’s symptoms. While research progresses slowly, we still do not have a clear understanding of what causes endometriosis, how to diagnose it early without invasive procedures, how to ease symptoms, and ultimately treat and possibly cure the disease itself.

This special interview features great insight from a woman’s journey with endometriosis.  We explore her remarkable quest for answers from the range of pain relief to therapeutic treatments to risks of surgical solutions.

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SEXISM IN THE WOMEN'S HEALTHCARE by: Mary Nielsen

Many women suffer with undiagnosed endometriosis. The medical field has prided itself on providing objective observations because it claims to rely on science. However, sexism lurks in hospitals, clinics and other health care facilities and the gender gap in treating pain is real. Diane Hoffman and Anita Tarzian from the University of Maryland, Francis King Carey School of Law published, "The Girl Who Cried Pain, A Bias against Women in the Treatment of Pain." Although that study is 20+ years old, little has changed.

Sexist stereotypes that see women as 'emotional' and consequently medical staff doubt a physical basis for women's pain. Men are viewed as more 'rational' and when men say they are feeling acute pain, their symptoms are taken more seriously and considered to have a physical cause. This means women receive very different care for pain management and pain diagnosis. Researcher, Karen Calderone found that women are more likely given sedatives as an answer to complaints of pain and are perceived as being anxious.

Medical professionals focus on returning the woman to a state of being calm and not investigating the cause behind their pain. The sedatives can then make the women seem calmer from outside appearance, while their medical condition can continue to worsen as they remain undiagnosed. Undiagnosed endometriosis has enormous repercussions for a woman. Life altering heavy bleeding, cramping and pain can lead to infertility, anemia, and internal adhesions requiring surgery. 

Education toward gender bias and addressing women's pain is needed to allow earlier diagnosis with a non-invasive technology like ultrasound. 

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Elevating Women's Wellbeing at Work

Insights from the US Surgeon General's Report

Written by: Joyce Gregory, MD

Promoting the mental health and wellbeing of women in the workplace remains paramount in today’s dynamic post COVID pandemic work landscape. Work plays a pivotal role in shaping the health, wealth, and overall wellbeing of women. Ideally, work provides women with the means to support themselves and their families while also offering a sense of purpose, opportunities for growth, and a supportive community. When women thrive in the workplace, they are more likely to experience both physical and mental wellness, contributing positively to their work environments.

Despite facing challenges like economic disparities, educational debts, and housing instability, organizations have the power to support women's mental health and wellbeing. Leaders and employees can rethink the role of work in women's lives and explore strategies to better support their needs. By prioritizing women's health and happiness at work, organizations can create environments where women can thrive both personally and professionally.

The US Surgeon General's 2022 report on Workplace Mental Health and Well-being offers a comprehensive framework that outlines five essential components designed to meet the unique needs of women in the workforce. Let's explore how these essentials can cultivate workplaces that prioritize women's well-being and professional growth.

Ensuring Protection from Harm

Prioritizing workplace safety is critical, particularly for women who may face heightened risks due to various factors such as discrimination and violence. Organizations must diligently adhere to regulations, improve policies, and collaborate with female employees to ensure a safe work environment.

Adequate rest is essential for the physical and mental well-being of women in the workplace while insufficient rest can lead to increased risks of injuries and burnout. Workplace leaders should consider factors like working hours and provide opportunities for rest to support the well-being and productivity of female employees.

Supporting mental health is crucial, especially for women, to combat stigma and foster inclusive cultures. Organizations can achieve this by providing training, enhancing Employee Assistance Programs (EAP), and ensuring comprehensive healthcare coverage.

Fostering Connection & Community

Fostering a sense of belonging in the workplace is paramount, particularly for women. Encouraging social interaction and breaking down barriers can cultivate positive relationships and shield against bias. Leaders must strive to create inclusive environments where every woman feels empowered to voice her thoughts.

Building trust among female colleagues is key. Leaders should facilitate opportunities for team members to bond, fostering empathy and support, particularly during challenging times. Strong workplace relationships not only enhance performance but also drive innovation, highlighting the importance of transparent communication.

In today's remote or hybrid work setups, promoting collaboration is essential. Leaders should advocate for teamwork, facilitate regular communication, and provide effective collaboration tools. Addressing broader social issues can further strengthen bonds among women, fostering a supportive environment.

Striking Work-Life Harmony

Achieving work-life balance is a common challenge, yet crucial for women's well-being. Granting women autonomy over their work methods and providing flexibility in tasks, schedules, and locations can mitigate conflicts and build trust. Implementing family-friendly policies and respecting boundaries between work and personal time are also essential.

Embracing Mattering at Work

Recognizing the contributions of women in the workplace is vital for fostering a sense of belonging and purpose. This involves providing fair compensation, engaging women in decision-making processes, fostering gratitude and recognition, and aligning individual work with the organizational mission. Empowering women enhances morale and organizational commitment.

Nurturing Opportunity for Growth

Providing women with opportunities for growth and learning is paramount. Companies should offer quality training, education, mentoring programs, and clear pathways for career advancement. Ensuring equitable distribution of opportunities and offering relevant feedback are essential for women's career development and fulfillment.

In the post-pandemic era, workplaces have a unique chance to prioritize women's mental health and well-being, fostering resilience and success. The Surgeon General’s 2022 Framework for Workplace Mental Health & Well-Being serves as a roadmap for creating supportive environments. Sustainable change requires dedicated leadership that amplifies the voices of women. I encourage you to explore the full report to gain deeper insights into fostering women's wellbeing in the workplace and creating inclusive environments for all.

Click to download full report

 

DR. JOYCE GREGORY holds over two decades of professional experience as a clinical psychiatrist specializing in addictions and mental health treatment programs.  She is dedicated to advancing performance-based solutions in both the healthcare and education sectors to enhance patient outcomes and academic achievements. She is deeply passionate about utilizing her clinical expertise and data-driven approach not only in healthcare but also in education to bridge the gap between medical science and industry. Dr. Gregory is also a recognized clinical speaker and a published educator.  Her latest educational contribution to mental health and wellness is in an upcoming series by BALANCE & LONGEVITY (WHC-TV) / Women's Health Collaborative) set to launch in the summer of 2024. 

Public Service Annc.

BREAST CANCER NEWS: THE 2024 WHC RESOURCE NEWORK PRESENTS THE COALITION FOR ULTRASOUND SCREENING

FOR IMMEDIATE RELEASE

MEET THE NEXT CHAMPION PROGRAMS FOR EARLY DETECTION

5/1/2024- The Women’s Health Collaborative (WHC) officially launches what educational director Dr. Roberta Kline calls “the ultimate alliance of women’s health champions”.   This united volunteer group consists of public resources for women’s cancer, dense breast advocacy, research foundations of complex disorders (ie. Endometriosis and pelvic floor issues) and medical specialists from the private sector.  This coalition aligns the promotion of ultrasound technology as the common life-saving solution for affordable and effective medical screening programs.  

In support of the underserved and underdiagnosed women, the WHC was originally founded to bring early detection and public education about the many women’s health disorders that many find to be lacking in access and information. This doctrine united women’s health advocates like Geri Barish (Hewlett House), Joe Cappello (co-founder of the Are You Dense? Foundation), Dr. Robert Bard (IHRC / Integrative Health Research Center), Dr. Noelle Cutter (Molloy University Research on Ovarian and Breast Cancer research programs) and Nancy Novack (of nancyslist.org). “It’s time we wake up lawmakers and the medical community to re-evaluate the existing gold standards (like mammography),” stated Mr. Cappello during a Key to the City speech honored by Waterbury mayor Neil O’Leary. “We are finally picking up great steam in our national push to have all clinicians adopt the advanced results of ultrasound technology… as a sustainable and affordable solution for ALL women!” 

In a recent “Cancer Powermeet” event, leading advocacy leader Ms. Barish joined the WHC concept about “EARLIER DETECTION” in support of proactive screenings for women from 20-39.  “Due to the continuing rise in numbers of breast cancer cases in younger women, doctors need to change their thinking about starting checkups at 40.” Innovative screening plans comprise the use of ultrasound in screening centers and traveling vans as a starting point in underserved locations. For over 20 years, Ms. Barish has been active in state congress about a list of cancer related interests impacting women’s health including public initiatives like environmental causes and legislative change in healthcare protocols. 

THE NON-INVASIVE MOVEMENT
Cancer Imaging specialist Dr. Robert Bard presented a lecture in the 2024 Ultracon (AIUM) Symposium about diagnostic and screening innovations advancements the next stage in women’s longevity. “In the 1990's, 3D imaging allowed us to accurately detect uterine cancer, and particularly see abnormal ovarian tumors. In addition, imaging allowed us to detect an entire classification of ovarian cysts. Where ovarian cancer was once known as the ‘silent disease”, today's 3D ultrasound imaging brought the battle lines forward … as it can now identify potentially cancerous tumors in the glands in earlier stages pre-metastases. Creating a coalition promoting new education and clinical application of ultrasound is a game-changer-- offering a most affordable and highly accessible real-time scanning for immediate answers for women’s concerns”. 

The outreach team behind the WHC aims to connect with lawmakers and health professionals alike, in pursuit of change through awareness.  The Women’s Health Collaborative continues its mission to unite with new resources in support of better screening, community outreach and educational efforts to improve healthcare for women. 

PROGRAM 1: EARLIER DETECTION

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PROGRAM 2: DENSE BREAST SCREENING

Video News Release: Innovations in Early Detection "Are You Dense?" Foundation Co-founder Joe Cappello joins the medical diagnostic community to promote the "Get Checked Now!" campaign. Dr. Robert Bard from the Bard Cancer Center (NYC) supports supplemental imaging including the 3D Doppler Ultrasound scanner to offer dense breast detection.  This video presents some of the latest advancements in ultrasound features to detect tumors through dense breast tissue- reportedly a significant challenge with mammograms.

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PROGRAM 3: GENE TESTING FOR CANCER PREDISPOSITION: TEST- DON’T GUESS!

CANCER PREDISPOSITION, HEREDITY & GENE TESTING
Most CANCERS are not directly caused by inherited gene mutations. Unlike traits and characteristics passed down to children like blood type and eye color, which are a direct result of genetics, chronic diseases like cancer are recognized to be the result of an interaction between your genetics and your environment. These genetic changes that increase the risk of cancer CAN be passed down or inherited.  

When a specific cancer type is prevalent in one side of the family, the cancer is recognized as a FAMILIAL cancer. Many of them are caused by a genetic mutation in one or more genes related to cancer susceptibility, such as BRCA1 and breast cancer. This is also the case with a "family cancer syndrome" (or "hereditary cancer syndrome"), such as Lynch Syndrome, which is a rare disorder in which family members have an above-average chance of developing a certain type or types of cancer. It is reported that up to 10% of all cancer cases may be caused by specific inherited genetic mutations called CANCER PREDISPOSITION genes. Individuals who carry a mutant allele of these genes have an increased susceptibility to cancer. Research also shows that other types of genetic variations can also predispose to cancer including epigenetics.  It is now widely identified that an accumulation of genetic or epigenetic alterations can affect the conversion of normal cells to cancer cells. 

GET CHECKED NOW!
If you have family members that have been diagnosed with cancer, you may want to consider a comprehensive genetic test to get your personal biological blueprint which includes your predisposition.  Call today to speak to a genetic advisor for a free consultation at 212-355-7017. THE WOMEN'S HEALTH COLLABORATIVE is an all-volunteer support resource offering public awareness about health solutions for women. We are not a medical facility but are navigators in support of understanding the current resources available. We also provide public news, educational materials and information about the latest resources in specific health disorders. FOLLOW US ON LINKEDIN and subscribe to the Women's Health Newsletter!  

VIDEO SPOTLIGHT: Cancer Science News features Dr. Ben Ho Park on EARLIER DETECTION & THE TYPES OF BREAST CANCERS Ben Ho Park, MD, PhD, is Director of the Vanderbilt-Ingram Cancer Center (VICC). Dr. Park is also a Professor of Medicine in the Department of Medicine's Division of Hematology and Oncology. Dr. Park's research is dedicated to finding a cure for all types of breast cancer by investigating mutated and altered genes responsible for the development and progression of breast cancer, as well as genes that lead to drug resistance. He is actively involved with the VICC Breast Cancer Research Program’s clinical research team to translate his research into clinical practice and patient care.  (Complete interview & feature story)