It’s Christmas Eve and we just wanted to drop by to wish you all a Merry Christmas. We hope that despite the challenging year that we have all had, that you will all be able to enjoy the holiday season and get a much-needed break.
This year has really tested us all and although it has been a rough one, it was also nice to see all the acts of kindness that were on display. From churches and charities delivering food and taking care of our spiritual and mental health to frontline workers going above and beyond the call of duty to care for our loved ones, keep us safe and ensure we had all the essential items we needed; we could really see God’s love at work in many people.
As we reflect on this past year and the true meaning of Christmas, we are struck by one important lesson, we are part of one family – the human race; God’s children – and as such we should look out for each other, not because it is our job but because we should genuinely care for another and love one another. This is what we should hold on to when the media, political parties and ill-equipped leaders, Presidents and Prime Ministers try to divide us and create mistrust. We are one people, experiencing the same challenges and we should be able to empathise and sympathise with each other. Therefore, we must do what it takes to protect those who are vulnerable and less fortunate than ourselves because, as this pandemic has taught us, we are either one paycheque away or one infected person away from being vulnerable too. So, in this current climate, we must be community-focused. This means taking simple, preventative actions such as wearing a mask in a public place, sanitising or washing our hands regularly and physical distancing when in public. With COVID-19 cases increasing rapidly because of the new mutation, this is not the time to focus on self and a misguided notion that wearing a mask is affecting your civil rights, if we’re willing to wear a seat belt whilst driving, pay our taxes and pay for insurance we’ll never use, then wearing a mask in a public place really isn’t that much of an imposition. Think of those with compromised immune systems such as those living with non-communicable diseases like cancer; and the elderly. They need us to get through this pandemic safely. Let’s be our brother’s keeper and come together to overcome this.
With that said, we hope you have a wonderful, safe Christmas and holiday season, filled with love and if you’re looking for some interesting, insightful, inspiring or thought-provoking content to keep you entertained while you’re at home over the holidays, then we recommend listening to some of our favourite podcasts, which are listed below. Enjoy!
The Ted Radio Hour– TED Radio Hour investigates the biggest questions of our time with the help of the world’s greatest thinkers
Hidden Brain– Hidden Brain reveals the unconscious patterns that drive human behaviour and the biases that shape our choices.
Radio Diaries– First-person diaries, sound portraits, and hidden chapters of history from Peabody Award-winning producer Joe Richman and the Radio Diaries team.
The Rare Birds Podcast– A series of early-stage entrepreneurship podcasts which focuses on developing economies and emerging markets
Buried Truths–Buried Truths acknowledges and unearths still-relevant stories of injustice, racism, and resistance in the American South.
Ear Hustle– Ear Hustle was the first podcast created and produced in prison, featuring stories of the daily realities of life inside California’s San Quentin State Prison, shared by those living it
Code Switch– Overlapping themes of race, ethnicity and culture, how they play out in our lives and communities, and how all of this is shifting
The Comb– Combing Africa for stories about the unseen forces that bind us together and tear us apart.
Public Health Culture – A podcast that discusses the social determinants of health, health disparities, community-centred research and program management
Rough Translation– Stories that follow familiar conversations into unfamiliar territory
We love listening to podcasts as we are able to access in-depth stories and analysis of important topical issues. We especially like listening to podcasts that cover public health topics as it gives us rare insight directly from the researchers, policymakers and NGOs working out in the community to improve the public’s health. With that said, a couple of weeks ago, the BBC’s The Documentary Podcast released an episode on the obesity crisis amongst Buddhist monks in Thailand. This is a public health crisis that we weren’t aware of and so we found this be a remarkably interesting episode. In this episode, we heard of all the factors that have led to this crisis and how an age-old, well-intentioned custom of offering food to monks has been corrupted by modern-day habits leading to this current obesity crisis.
Historically, the giving and receiving of alms between monks and their local community were of significant benefit. The community would take care of the physical health of monks by preparing healthy, home-cooked meals and in return, the monks would take care of the spiritual health of their community. With communities getting more affluent and many people working long hours, the public no longer has time to cook for monks and instead buy foods that are high in fat and sugar. Combining this with the fact that monks are not meeting the recommended amounts of physical activity has meant that 1 in 2 Thai monks are now obese and this puts them at a high risk of developing non-communicable diseases like diabetes and heart disease.
Overall, researchers in Thailand identified four main factors leading to the high prevalence of obesity in monks:
An unhealthy diet
High consumption of sugary drinks
Loose-fitting robes, which means monks are gaining weight without realising it
Physical inactivity.
This podcast episode also explored the work the Thai Government is doing to address this problem through special clinics for monks and the Healthy Monks, Healthy Nutrition Project which has developed specific solutions for monks. One creative approach to tackling this crisis was the development of a smart belt to create a trigger for weight gain to alert monks that they are gaining weight.
This was a very interesting story that highlights the dangers of diets that are high in sugar, salt and fat as well as being physically inactive. We hope that Thailand will be successful in managing this crisis.
You can listen to the podcast episode here where you’ll hear from researchers, monks and members of the public to gain a full understanding of how the crisis started and the steps being taken to address this issue.
Last week, we were delighted to attend the Global Health Advocacy Incubator’s (GHAI) webinar ‘Facing Two Pandemics: How Big Food Undermined Public Health in the Era of COVID-19.’ This webinar featured presentations and a panel discussion with speakers from Latin America and the US, including:
Together, the above-mentioned speakers highlighted the tactics employed by the food and beverage industry to influence food policy and public perception of their brands during the pandemic.
Setting the scene was the first speaker, Holly Wong, who presented the findings from the Global Health Advocacy’s Incubator’s qualitative evaluation of industry interference during the pandemic. Between March and July 2020, this project collected over 280 examples of industry interference from 18 countries. Through the analysis of these examples, the GHAI was able to identify four main methods used by industry to exploit the pandemic to promote their products, influence food policy and further their own interests at the expense of the public’s health. These four methods included:
Deceptive marketing– this involved positioning their unhealthy products as beneficial to the immune system or to overall health. This enabled companies to classify these products as essential items so their manufacturing facilities could remain open during countries’ States of Emergencies, restrictions or lockdowns.
Corporate Solidarity Actions– this is where companies partnered with governments to fund and support COVID-19 relief efforts and whilst doing so promoted their unhealthy products, strategically aimed to improve the public’s perception of their brands and positioned themselves as authorities on health matters `
Donations of junk food– fast food companies donated their products to disadvantaged communities, frontline workers and food banks. These products are high in salt, sugar and fat and therefore increase the public’s risk of developing NCDs. It is widely known that individuals with NCDs are more vulnerable to COVID-19 and are more likely to develop complications and therefore these donations do not align with efforts to protect the public from COVID-19.
Philanthropy combined with lobbying against healthy food policies–overall, during the pandemic, the food and beverage industry participated in a range of seemingly philanthropic activities – donating junk food, setting up COVID-19 test sites, funding online educational platforms for school children and donating respirators – whilst actively lobbying against beneficial health policies, and thus, in the long run, their lobbying will have a negative impact on the public’s health.
Following Holly Wong’s overview of the findings of the GHAI’s qualitative evaluation, we heard from Camila Maranha and Martha Yaneth Sandoval Salazar who provided specific examples of industry interference in Brazil and Colombia, respectively. This further illustrated the four methods presented by Holly Wong and gave attendees a flavour of how these methods were implemented. The event ended with a panel discussion with additional contributions from Alison Friedman and Lucy Sullivan Martinez.
We really enjoyed this very insightful webinar which was a comprehensive exploration of industry interference and how companies can control and exploit national emergencies if Governments do not have policies or a code of conduct in place to prevent conflicts of interest.
What Does This Mean for the Public?
During this time, the public must eat a healthy diet that is rich in fruits and vegetables to improve their overall health and strengthen their immune system. If products are being marketed as immune boosters, we would encourage the public to evaluate these products to determine whether these claims are accurate. You can seek advice from a trusted source such as your country’s department or ministry of health about evidence-based approaches to strengthen your immune system. It’s also important to avoid the ultra-processed and junk foods that companies are currently heavily promoting as these have no nutritional value and therefore will be of no benefit to your health.
Furthermore, information is power and with this evidence from the GHAI, the public is now empowered to make an informed decision about whether to accept industry’s donations, discounts and giveaways. The findings of the report also enable the public to understand the food industry’s motives and we would encourage everyone to use this information to become a discerning consumer and be selective about the brands you choose to support.
More Information
You can read GHAI’s full report and executive summary here or you can watch a recording of the webinarhere.
Saturday 14thNovember was World Diabetes Day and the St Kitts Diabetes Association shared some useful tips for those living with diabetes. You can view their video below, but if you don’t have time, just think T.E.E.M.
T-Test your blood regularly
E– Eat right
E– Exercise frequently
M– Medication, take it as prescribed
Following the above-mentioned tips can reduce diabetics’ risk of developing complications.
For more information about the St Kitts Diabetes Association’s World Diabetes Day activities, you can visit thiswebpage
Today’s blog post comes from Andrea Kallumadyil. Andrea is from Ontario, Canada and is a medical student from UMHS. She is currently the president of Because We Care and the vice president of the American Medical Student Association at UMHS.
In this post, Andrea bravely shares her journey with PCOS and the life lessons it has taught her along the way.
One of my earliest memories as a child is standing in the hallway with my Grade 3 teacher as I chugged three boxes of apple juice. My Mom picked me up soon after, and I was to have my first ultrasound in a nearby city later that day. The week before, I had my first period. Being of South Asian descent, my family was beyond excited that I had “become a woman” at 8. We spent the afternoon, to my embarrassment, calling up relatives in India announcing the good news. My parents took me out to a nearby convenience store, where I picked out a gift to celebrate the big day. On our way home, we stopped at the walk-in clinic to make sure everything was okay. Practising in a small town with predominantly white patients, my doctor had never had a patient have their period so young. She assumed it could be explained by my South Asian background but decided to run some tests just in case it was something else. The healthcare staff poked and prodded me, only for the tests and ultrasound to come back normal. I was sent home and did not have another period for four years.
I got my period again when I was 12 years old. My periods seemed to have a mind of their own. They would come and go as they please – but they were consistently heavy, caused me a lot of pain, and lasted at least a week. A few months into this unpredictable cycle, I had a period that was more than 30 days long. I was pale, and my hands and feet were freezing in the middle of the summer. They ran some blood tests and referred me to a gynaecologist. I was not only anaemic but also had high levels of free testosterone in my system. Given my lab values and symptoms, the gynaecologist had said it was a straightforward diagnosis: PCOS.
What is PCOS? What are the Symptoms?
Polycystic Ovarian/Ovary Syndrome is an endocrine (hormonal) disorder that affects the normal functioning of your ovaries. The three main features are
Ovary Dysfunction: Presents as irregular periods, including infrequent periods, prolonged periods, and an absence of periods.
High levels of androgen: Determined either with a blood test or via symptoms of hirsutism (excess body/facial hair) or acne. Androgens, although referred to as male sex hormones, are naturally occurring hormones at low levels in females.
Cystic Ovaries: The collection of fluid in follicles preventing the release of an egg during your menstrual cycle (ovulation).
A patient usually requires at least two of the three main features to be diagnosed with PCOS. The different combinations give rise to 4 distinct PCOS phenotypes:
Phenotype A: High levels of androgen, ovary dysfunction, and cysts.
Phenotype B: High levels of androgen and ovary dysfunction
Phenotype C: High levels of androgen and cysts.
Phenotype D: Ovary dysfunction and cysts.
In my case, I had irregular periods and high levels of androgen shown both in my blood tests and excessive body and facial hair (hirsutism): Phenotype B. During your diagnostic process, your health care provider may also order an ultrasound and gynaecological exam to rule out other potential causes for your symptoms.
Hirsutism is hard to assess, especially since many populations – Middle Eastern, South Asian and Mediterranean – have more body/facial hair than other ethnic groups, despite having normal androgen levels. Being of South Asian background myself, and the only South Asian family in a then-predominantly white community, my hirsutism was initially overlooked. For many young persons with PCOS, including myself, this continues to be one of the most challenging symptoms to manage.
Outside of the 3 diagnostic features, PCOS has many other symptoms and complications, including:
Infertility: PCOS is one of the most common causes of infertility due to less frequent ovulation. It can also increase the risk of pregnancy complications like gestational diabetes and miscarriage.
Weight Gain and Trouble with Weight Loss: Almost 80% of persons diagnosed with PCOS are overweight. Additionally, being overweight can make other PCOS symptoms even worse.
Metabolic Syndrome: Those overweight and those with PCOS are at risk for insulin resistance leading to diabetes, high blood pressure, and high cholesterol levels. This puts those with PCOS at risk for developing heart disease – as many as 50% of persons with PCOS will have insulin resistance.
Androgenic Alopecia: Excess androgen can cause hair loss on the head. Resembles male pattern balding.
Acanthosis Nigricans: Dark and thick skin around the neck, breasts, armpits, and groin area
Sleep Apnea: The risk is about 5-10 times higher for those with PCOS. This is primarily because those with PCOS are likely to be overweight.
Depression, Anxiety &Disorders: Hormonal changes along can increase the likelihood of experiencing depression. Symptoms like hirsutism can increase this risk.
Endometrial Cancer: The lining of the uterus (endometrium) is at risk of developing cancer if you are insulin resistant, overweight or have trouble ovulating – all of which are PCOS features.
Treatment
With each additional symptom, my doctor explained, I felt myself becoming more and more ostracized, imagining all the new ways I’d look even more different from my friends in my hometown. The racing images came to a halt when I heard the word infertility. I was too shocked to process the rest of the information I received and was frankly too embarrassed to ask any questions about what I did hear. I was prescribed an oral contraceptive for my irregular cycles and Vaniqa (a topical hair growth inhibitor) for my hirsutism and left the office. When we got in the car, my Mom asked if I was okay, and in response, I cried the entire 45 minutes home.
I wish I knew that although PCOS is one of the most common causes of infertility, it is also one of the most treatable. There are many options available to manage the symptoms of PCOS.
Oral Contraceptive Pills: OCPs help regulate hormone levels and foster regular, predictable periods that are shorter in duration with a lighter flow.
Metformin: A diabetes drug that improves insulin resistance, can promote weight loss, reduces the rate of miscarriage, and promotes regular menstrual cycles.
Spironolactone: An androgen medication that can be used to lower androgen levels in your body. This will improve symptoms of androgenic alopecia, hirsutism, and hormonal acne.
Hair Removal: Once hormone levels are managed, many people have success with electrolysis – the only truly permanent hair removal solution. A probe is inserted into each hair follicle to destroy each hair’s growth centre. Other less permanent methods include laser hair removal, epilation, threading, sugaring/waxing, or depilatory creams. A hair growth inhibitor like Vaniqacan also be used, but the hair will resume growth if you cease usage.
Weight Loss: Losing up to 5-10% of your body fat can be enough to kick start ovulation. There is also some evidence that a low carb diet may improve your hormone levels and increase fertility. A healthy lifestyle consisting of nutritious foods and exercise will enhance fertility treatment effectiveness regardless of weight loss – remember, it is highly recommended to consult a health care provider before making any significant lifestyle changes.
Acupuncture: There is some emerging evidence that acupuncture procedures restore LH and FSH hormone ratios and promote regular menstrual cycles in those with PCOS.
Surgery: A laparoscopic procedure that involves destroying a part of the ovary with an electric current. This can stimulate ovulation and decrease androgen levels. The results last for a few months.
For those trying to get pregnant, additional treatment options include:
Fertility Drugs: Clomid is a fertility drug that triggers ovulation and is often used in combination with metformin. Although some persons can become resistant to the drug, Letrozole (a cancer drug) has shown to be effective in stimulating ovulation in such situations. Injectable gonadotropins are also available under different brand names to stimulate ovulation. However, those with PCOS are at a high risk of developing ovarian hyperstimulation syndrome. Furthermore, you are also at increased risk for multiple pregnancies.
Intrauterine Insemination (IUI): A process involving sperm placement in the uterus with a catheter. This process is known to increase the total number of sperm that reach the fallopian tubes.
In Vitro Fertilization (IVF): After stimulation of egg production, multiple eggs are removed and inseminated in a lab dish. Multiple embryos are transferred a few days later back into the uterus.
There is also evidence that the following supplements can relieve some symptoms of PCOS. They include:
Myo-inositol: Reduces the risk of gestational diabetes
Inositol: Increases the number of ovulations, thereby leading to a higher chance of successful conception.
Omega-3 Fish Oils: Lowers total cholesterol levels.
Co-Supplementation of Magnesium, Zinc, Calcium, and Vitamin D: Provides beneficial effects on hormone levels while reducing inflammation and oxidative stress caused by PCOS.
Living With PCOS
Being diagnosed and starting treatment at a very young age, I was fortunate to not have to deal with the unpredictability of irregular periods. However, I did struggle with managing my hirsutism. I started laser hair removal almost immediately after my diagnosis and embarked on a process that would last several years. I bleached most of my body hair to feel comfortable wearing revealing clothes. I eventually switched to electrolysis, which did reduce the amount of hair grown by 30% but was incredibly painful and time-consuming. I considered myself a very anxious person but was officially diagnosed with anxiety and depression at the beginning of my undergraduate degree. I quickly gained a lot of weight following a high-stress period and my hirsutism got much worse as a result. I went on the keto diet to lose it and obsessively worked out.
However, a restrictive lifestyle like that was not sustainable for me and did not promote good mental health. I was still terrified that I would never have kids and am to this day very set on a specific timeline in my head. I initially set aside my career goals of becoming a physician for something attainable in a shorter period. I bounced from counselling to nursing to speech-language pathology. I did every possible prerequisite during my bachelor’s degree to keep all of my options open. I read countless blogs and videos of what other persons with PCOS did for family planning, careers, and managing their symptoms. I realized that everyone had their own unique story and that the only commonality is that they all did what made them happy. Those that wanted to start a family were able to do so without compromising their career goals. From then on, I began to focus on what I wanted instead of letting my PCOS control every little detail of my life. I stopped being so hard on myself for having symptoms. I started to wear short sleeves without bleaching, I got into the program I wanted to get into, and most importantly, I began to accept myself for who I am. It has been such a freeing experience.
For those currently struggling with PCOS right now:
Try not to compare yourself to anyone else.
Work on what is best for you, given your own story.
Learn to be comfortable in your skin.
Talk to your health care provider to figure out the best way to manage your symptoms.
And most importantly: do not let anyone convince you that your PCOS can stop you from doing whatever you set your mind to.
****
We would like to say a big thank you to Andrea for being so open and bravely sharing her PCOS story. If you’d like to ask her a question, please leave it in the comments section below or you can email your question to info@lakehealthandwellbeing.com
Sources
D’Anna, R., Di Benedetto, V., Rizzo, P., Raffone, E., Interdonato, M. L., Corrado, F., & Di Benedetto, A. (2012). Myo-inositol may prevent gestational diabetes in PCOS women. Gynecological endocrinology : the official journal of the International Society of Gynecological Endocrinology, 28(6), 440–442. https://doi.org/10.3109/09513590.2011.633665
Alois, M., & Estores, I. M. (2019). Hormonal Regulation In Pcos Using Acupuncture And Herbal Supplements: A Case Report And Review Of The Literature. Integrative Medicine (Encinitas, Calif.), 18(5), 36-39.
Arentz, S., Smith, C. A., Abbott, J., & Bensoussan, A. (2017). Nutritional supplements and herbal medicines for women with polycystic ovary syndrome; a systematic review and meta-analysis. BMC complementary and alternative medicine, 17(1), 500. https://doi.org/10.1186/s12906-017-2011-x
Lizneva, D., Suturina, L., Walker, W., Brakta, S., Gavrilova-Jordan, L., & Azziz, R. (2016). Criteria, prevalence, and phenotypes of polycystic ovary syndrome. Fertility and sterility, 106(1), 6–15. https://doi.org/10.1016/j.fertnstert.2016.05.003
Maktabi, M., Jamilian, M., & Asemi, Z. (2018). Magnesium-Zinc-Calcium-Vitamin D co-supplementation improves hormonal profiles, biomarkers of inflammation and oxidative stress in women with polycystic ovary syndrome: a randomized, double-blind, placebo-controlled trial. Biological trace element research, 182(1), 21–28. https://doi.org/10.1007/s12011-017-1085-0
Polycystic Ovary Syndrome (PCOS). (2020). Retrieved 16 October 2020 from https://www.mayoclinic.org/diseases-conditions/pcos/symptoms-causes/syc-20353439
Polycystic Ovary Syndrome. (2012). Retrieved 16 October 2020 from https://americanpregnancy.org/womens-health/polycystic-ovary-syndrome-70990
Polycystic Ovary Syndrome. (2019). Retrieved 16 October 2020 from https://www.womenshealth.gov/a-z-topics/polycystic-ovary-syndrome
Polycystic Ovary Syndrome. (2019). Retrieved 16 October 2020 from https://www.healthlinkbc.ca/health-topics/tw9103
Today’s blog post comes from Deji Ajose-Adeogun. Deji shares his 20-year battle with weight loss and explains how a recent change in mindset gave him the motivation and discipline to succeed in his quest to lose weight.
I have been dealing with being overweight since I left college. I never thought about what I was eating when I was younger because I was extremely active, so my eating was never an issue. Hours playing sports and lots of activity kept my weight in check. Well, as college finished and I proceeded out into the real world and got a job, my physical activity levels decreased drastically, but my way of eating did not change. So, I was eating more calories than I was burning. The math meant that I was going to gain weight. The pounds kept creeping up until last year when I topped out somewhere between 285-295 pounds. My clothes were not fitting me. Can you imagine that I left for college at 180 pounds, then I dropped to 165 in my first year of college. This was partly due to all the walking because that was the only mode of transportation and campus food was ok. Over the years, I have tried to lose weight. It has been like a yoyo, up one minute, down the next. This has been a battle for the last 20 years and it needs to end.
This is how the cycle has been. I joined the gym about 18 years ago, which I have been to on and off. One minute I am heavy with the gym, another minute I am not. In my 20’s it was easy to drop the weight, and it has also been a battle of the wits. When you lose that weight you start to feel good and like you can take on the world. Then you feel you can control it, and start back to old eating habits because I am lighter, next thing you know you are back up in weight again. Mind you, I thought I had it all under control. This is how the yoyo diet works. Your eating habits are only temporary until the weight is off. This is what it has been like for about 20 years. Then one day you say, “I give up” you start putting on weight, you get discouraged, you drown yourself in more food. It becomes self-defeating. I have been on cholesterol medication and blood pressure medicine. My doctor said I really need to do something about this so I am not on this medication for the rest of my life. I am not sure when it struck me. Was it my mom’s health situation and her passing in 2019? It might have been, but I knew that I had to deal with this immediately. I had to show my children, by example, what it means to eat well. I also have to be there for my kids, I know we are not promised tomorrow, but it did not mean getting there in a race car. It was embarrassing that I could not even get on a ride at an amusement park with my children about a year or two prior. I had to wait outside. I said to myself, the next time we came back, I am going on that ride with my children.
I had to figure something out that works for me and will not be a fad diet. I started to hear about intermittent fasting. I started to do more research to see if it will work for me. It involved fasting for 16 hours a day and eating in an 8-hour window. So, I would go from 8 pm to 12 pm the next day. This is a way of eating for many cultures. Some only eat one meal a day. The more I started to read about this way of eating, the more it made sense to me – the 16 hours give your organs a chance to rest and can help control blood sugar (as long as you are cutting back on sugars). I started eating more salads realising that what I was doing before had my organs constantly working.
I started in August 2019. The first month was a struggle, it was hard getting used to the new way of eating. I lowered my sugar intake drastically and ate more greens. I started to watch more videos about our diet and learnt that most people lack vitamin D, Vitamin K, potassium, good fats, good cholesterol, certain B vitamins, etc. I even started to learn that not all meats/proteins are good for you, partly because of all the chemicals and hormones in them. I started to try and eat as many organic items as possible. If not organic, anything that was less processed, such as farm-raised eggs, grass-fed cows, almond milk, etc. I started to eat out less and cook more.
There is so much more to losing weight than just eating less. It is also about eating correctly and getting the correct nutrients in your diet to help with your overall health. When I started to focus on health and not just weight loss that was the trick. Doing it for the right reason, my health, made me more disciplined and the pounds started to come off. I was not stressing if I did not lose the pounds, I was focused on just being healthier. Also measuring myself helped because you can gain muscle mass, which can mean your weight can remain the same, but your measurements can decrease.
At the end of the day for parents, it is key you teach your kids from a young age to eat properly, and exercise. You may want to exercise with them because that is where the habits will grow. It has taken me a lifetime to figure this out.
We would like to say a big thank you to Deji for sharing is weight loss story with us. We hope that through his experience, you can get a little bit of inspiration to help you achieve your weight loss goals. Have a question for Deji? Want to give him some encouragement? Then please do leave these in the comments section below.
Today’s blog post comes from Aaron D’Souza, a second-year medical student at the University of Medicine and Health Sciences in St. Kitts. While he has been active at school in multiple areas including playing soccer for the school and teaching high schoolers neuroscience with the BrainBee project, he is helping us as a new volunteer.
Aaron discusses the emotions and challenges faced by caregivers of patients with multiple myeloma. By recounting his mother’s experience as a caregiver, he identifies barriers that a caregiver may struggle with and provides scientifically supported practical advice to help those who have recently become caregivers of a loved one with multiple myeloma.
Cancer is a group of diseases that everyone is familiar with in some form. Formally, it is the uncontrolled replication of cells leading to various problems. One particular cancer that will be the focus of this post is multiple myeloma (MM). Specifically, we will focus on the caregiver burden of those caring for someone with MM, as there is a lack of emphasis on their well-being and personal experience, but first, a bit of background information.
What is MM? MM is a type of blood cancer that is progressively debilitating, painful and ultimately fatal (most commonly due to infection).
Who is at risk? It occurs 1.6x more often in males than in females. It is 2x as often in the Black population than in the Caucasian population. Additionally, Black people are more likely to get it at a younger age.
When is it usually diagnosed? The median age of diagnosis is 65 years old. In cases diagnosed and treated early, 60% of patients will survive up to 5 years; only a fraction will survive 10 years after diagnosis.
What causes it? While there is a confirmed genetic role, there is also evidence of many other factors contributing to its onset. Such factors include exposure to radioactive substances and certain chemicals, such as benzene. Usually, a large dose of benzene can only be acquired from being exposed to factory emissions for several years or wastewater.
What are some symptoms?MM has systemic complications ranging from severe bone pain/ osteoporosis to kidney failure and infection. Throughout the progression of the disease and administration of treatment, it is standard to see periods of remission, periods of high severity and periods where the side effects feel worse than the disease.
Can it be treated? Sadly, the majority of people with MM will pass away. Recovery is possible if the patient is diagnosed early and started on therapy. Treatment ranges from conventional chemotherapy to stem cell transplantation. You can find more information on how these treatments work on the American Cancer Society’s website.
Unfortunately, MM patients are often misdiagnosed or are diagnosed late because there is a lack of experience diagnosing it among physicians. The latter happened with my grandfather, and within 1 year of diagnosis, he passed away. While many understand the suffering of a cancer patient, not many understand the challenges the caregivers face; a role that my mother fulfilled for my grandfather. A caregiver is someone responsible for the needs of the patient, often without any compensation. Responsibilities of a caregiver include scheduling, transport, finances, housekeeping, legal support and emotional support. It is usually a spouse, adult, child, or other immediate family members that fill this role and the role of a caregiver can be simultaneously rewarding and challenging.
My mother had her own mix of such emotions as a caregiver. At the time of my grandfather’s diagnosis, we had already lived in Canada for 10 years and in the United Arab Emirates before that, while my grandparents were living in India. Although my mom would go to India over the summers to look after my grandparents, she was otherwise dependent on friends and relatives to ensure my grandparents’ health and safety. The inability to be there with them for longer left her with a sense of guilt at the end of each summer, especially the last summer before my grandfather’s death. The uneven sharing of the caregiver role among family had placed an enormous strain on some of these relationships
As a caregiver, it is essential to note that uncertainty is the greatest obstacle for the well-being of both the patient and the caregiver. A caregiver’s well-being often reflects the status of the patient. Studies have identified numerous challenges to caregiver well-being. Most caregivers face at least a few of these challenges:
Initial shock: After having to endure the path to diagnosis, eagerly awaiting results, the confirmation of a diagnosis for any type of cancer will come as a shock. Additionally, caregivers must adapt by changing their lifestyles and take on new responsibilities to support their loved ones. Part of the difficulty is due to the unpredictable course of the illness. Many patients and caregivers must endure the shock several times as the disease re-surfaces. Lack of knowledge about the disease is an enormous source of stress.
Commitment: Being a caregiver sometimes involves giving up your previous lifestyle to reserve free time for an emergency and patient care logistics. Logistics include, but are not limited to, finances and housekeeping (which change as the course of the disease changes).
The emotional sphere: Caregivers often have feelings of anxiety and fear. Patients often feel that they are burdening their caregivers and relatives with their condition. Caregivers have been found to have a similar attitude, not wanting to burden others with the responsibilities or emotional baggage that comes with being a caregiver. Consequently, they suffer by themselves, unable to honestly express their feelings while being afraid to leave the patient to have well-deserved self-care. They often experience spiritual suffering, unable to find finding meaning in the disease.
As a medical student who is always looking for ways to help people, I have found many coping strategies backed by evidence that worked for my mother and other caregivers. The following is a list of strategies, that as a caregiver, may help you provide the best possible care while looking after your own well-being:
Ensure that you have a list of questions you can ask the doctor when going in for a visit. Make sure you cover the diagnosis, progression and what to expect, types of treatments, treatments in clinical trials, and end-of-life and palliative care. A full list of questions can be found at the National Cancer Institute. If possible, ask the hospital to send the results home before meeting up with the doctor to help you take in the news and develop better questions.
Establish your support system. Rather than bottling up emotions and avoiding burdening others, try to connect with others, spread the responsibility, and the emotional burden with close relatives or friends.
Know your support services. Joining a support group is an excellent resource for information on handling caregiver responsibilities, treatment options, possible side effects, warning signs, etc. It is also a safe space where you can vent your thoughts to those able to relate and learn from others about their coping strategies.
Keep doing the things you enjoy. It’s okay to leave the patient in the care of someone else for a few hours or a day so you can recuperate. It will only help you become a better caregiver and help you remember your loved one with fondness rather than as a burden.
Use mindfulness meditation and improve emotion-regulation. These will help you prepare for the hard days and the death of your loved one.
Understanding and anticipating the challenges will allow you to avoid some of the anxieties associated with caregiving and better manage your time so you can spend it with your loved one. Keep in mind that every caregiver-patient relationship is different. There is more than one way to be a great caregiver. I hope the strategies above (which are by no means an exhaustive list) will go a long way in promoting caregiver well-being physically, emotionally, and spiritually.
More Support
We’re aiming to support multiple myeloma patients and their family members through the JAA Fund. Small support grants are currently available for patients in St Kitts, Nevis, the British Virgin Islands, Trinidad and Tobago. If you’ve been affected by multiple myeloma, live in one of these countries and require some financial support, you can apply for a grant here
References
Aksoy, M., Erdem, Ş., Dinçol, G., Kutlar, A., Bakioğlu, I., & Hepyüksel, T. (1984). Clinical Observations Showing the Role of Some Factors in the Etiology of Multiple Myeloma. Acta Haematologica, 71(2), 116-120. doi: 10.1159/000206568
Howell, D., Hart, R., Smith, A., Macleod, U., Patmore, R., Cook, G., & Roman, E. (2018). Myeloma: Patient accounts of their pathways to diagnosis. PLOS ONE, 13(4), e0194788. doi: 10.1371/journal.pone.0194788
Monterosso, L., Taylor, K., Platt, V., Lobb, E., Musiello, T., & Bulsara, C. et al. (2017). Living With Multiple Myeloma. Journal Of Patient Experience, 5(1), 6-15. doi: 10.1177/2374373517715011
Multiple Myeloma. (2020). Retrieved 11 September 2020, from https://www.cancer.org/cancer/multiple-myeloma.html
Quiñoa-Salanova, C., Porta-Sales, J., Monforte-Royo, C., & Edo-Gual, M. (2019). The experiences and needs of primary family caregivers of patients with multiple myeloma: A qualitative analysis. Palliative Medicine, 33(5), 500-509. doi: 10.1177/0269216319830017
Waxman, A., Mink, P., Devesa, S., Anderson, W., Weiss, B., & Kristinsson, S. et al. (2010). Racial disparities in incidence and outcome in multiple myeloma: a population-based study. Blood, 116(25), 5501-5506. doi: 10.1182/blood-2010-07-298760
We’re happy to announce that our My Healthy Heroes badges and fridge magnets are now available at Best Way Pharmacy in St Kitts.
These badges and fridges magnets are a great keepsake for children and act as a reminder for kids of what they should and shouldn’t be eating as part of a healthy diet. We’ve tried to use a bit of humour with these items and hope it’ll put a little smile on children’s faces.
Our My Healthy Heroes program aims to educate and empower children to make healthy choices by tapping into their creativity to highlight the importance of a healthy lifestyle in a fun and engaging way.
At the beginning of the year, we ran a 6-week pilot of our My Healthy Heroes program with fourth-graders from St Kitts. This pilot project aimed to test our resources and characters (Healthy Heroes, Sugary Drinks Assassins and Junk Food Villains) and determine whether our approach would be effective at educating children about healthy eating and more importantly facilitate a change in their behaviour.
One of the items we tested with children during our pilot was our badges, and they were a hit. Children wore the badges to the sessions every week and did their best to win more by answering questions about healthy eating, it was fun.
If you’d like to find out more about our My Healthy Heroes project, you can read about our pilot here.
So, if you’d like a fun trinket for your children or students, then please do visit Best Way Pharmacy in St Kitts (near the cinema) and pick up a badge or fridge magnet. Additionally, bulk orders are available for health awareness events and for use in the classroom if you’re a teacher. For more information, please email us
Finally, we’re hoping to begin work on the next phase of our project in a couple of months and more information will be made available about this soon.
The 1st of August is Emancipation Day in the former British colonies in the Caribbean. It’s a day where we commemorate the passing of the Slavery Abolition Bill in 1833 by the British government. This act formally abolished slavery in British colonies with, on paper, enslaved people gaining their freedom through British Law from 1st August 1834.
In reality, enslaved men and women over the age of six were forced to work for their former masters, uncompensated, for a further four years as part of an apprenticeship period. Real freedom was granted on 1st August 1838 when the British government passed a bill for complete emancipation. Following the passing of this bill, 750,000 Africans were freed, but with no real power to exercise their freedom, many were forced to work for their former slave masters for exceptionally low wages. This colonial period lasted until the 20th century and during this period Black people in the Caribbean were denied political, economic and social power.
The impact of slavery on the progress of people of African descent has been immense and this year, in St Kitts and Nevis, Emancipation Day was used to reflect on reparations and how the effects of slavery can be addressed.
Reparation is the process of repairing the damage caused by slavery – a crime against humanity. The reparation movement has a long history with former colonies advocating for justice and European countries failing to take responsibility for the crimes they committed in their quest to enrich their nations.
To tackle the issue of reparations in the Caribbean in a more structured manner, the CARICOM Reparations Commission was established in July 2013 and their mandate was to:
“Prepare the case for reparatory justice for the region’s indigenous and African descendant communities who are the victims of Crimes against Humanity (CAH) in the forms of genocide, slavery, slave trading, and racial apartheid.”
This mandate led to the formation of the CARICOM Reparations Justice Program which includes a Ten-Point Action Plan. This plan outlines clear steps that are required for reconciliation and justice for nations affected by the transatlantic slave trade, and we were delighted to see that action point five covers the public health crisis.
Reparations and Public Health
The recognition of the impact that slavery has had on the health of the people of the Caribbean is very important. The Caribbean has one of the highest incidences of hypertension and diabetes in the world and both of these conditions are risk factors for a number of other diseases. Our ill-health is a direct result of slavery with the CARICOM Reparations Committee explaining that the unaddressed “nutritional experience, physical and emotional brutality, and overall stress associated with slavery, genocide, and apartheid” has created a non-communicable disease pandemic.
Research into the lifestyles of enslaved Africans demonstrates that their poor nutrition and emotional brutality started during their journey across the Atlantic.
The conditions on the slave ships were deplorable. Enslaved Africans were chained together on decks that were overcrowded, unsanitary, unbearably hot, lacked oxygen and they were subjected to frequent physical and sexual abuse. During the three to six-week journey across the Atlantic, enslaved Africans were fed boiled rice and salted fish which was the start of their new life of poor nutrition.
Once they arrived in the Caribbean, as we know, the brutality continued and so did the lack of access to nutritious food. Research has suggested that their meals rarely varied and consisted of salt meat or salt fish and Guinea corn, and sometimes yam, bananas or plantains. If slave masters were feeling particularly generous, enslaved Africans were given treats such as tobacco, molasses and rum. As time progressed, enslaved Africans had to find and grow (yam, okra etc) more food to supplement what they were provided with and be creative in their meal preparation. This creativity has led to our modern-day dishes such as jerk chicken, souse, pig foot soup etc. which satisfied their hunger but wasn’t always healthy.
The lack of nutritious food led to many health problems and this combined with the brutality and trauma of slavery led to high infant and maternal mortality, and this high maternal mortality rate in Black women still persists today.
Today, a shift from homemade foods to a more Westernised diet rich in processed foods that are high in sugar, salt and saturated fat has exacerbated our diet-related health challenges. Additionally, the multigenerational trauma caused by four hundred years of slavery, which has been articulated by Dr Joy Degruy’s concept of Post Traumatic Slave Syndrome, links the behaviour and attitudes displayed by Black people today to slavery and highlights another important non-communicable disease that is a legacy of slavery – mental illness.
As the origins of the current public health crisis in the Caribbean can be traced back to slavery, the CARICOM Ten-Point Reparations Action Plan calls for “the injection of science, technology, and capital beyond the capacity of the region” to address this crisis.
We support CARICOM’s Ten-Point Action Plan and will continue to do our part to tackle NCDs in the Caribbean.
Guzman, RF. The Feeding of Slave Populations in the United States, the Caribbean and Brazil. Some Remakes on the State of the Art. Lat. Hist. Econ. 2012; 20(2):5-35.
