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We’re excited to be joining wotj Intercept for the TRUTH About NASH roundtable discussion in Washington, DC. We’ve assembled a dynamic group of people who all touch this disease in diverse ways, and look forward to a robust conversation encompassing varying viewpoints. As NASH progresses to becoming the leading indication for liver transplants in the U.S., we believe cross-stakeholder discussions like this are imperative – not only to help identify barriers to care and gaps in knowledge, but also to begin to pave the road to potential solutions for this community. 

We will be reviewing the findings from a new survey that takes a 360º look at NASH from the perspectives of healthcare professionals, diagnosed patients and the American public. We believe the survey will provide great stimuli for a discussion of some of the challenges facing people living with NASH.

This effort is part of our program to expand the discussion of liver disease and seek better solutions for patients and those who are asymptomatic but at risk.

THE PROBLEM: The real liver experts don’t offer effective diet advice

(click here for a pdf with all the science references)

Currently, the experts who treat liver disease, (the specialists of AASLD), do not officially recommend any specific diet for liver health. The reason is because there are not enough well-designed dietary clinical trials focused specifically on the liver to give the organ experts confidence to make official dietary recommendations. This creates a serious dilemma. As patients we don’t have that luxury. We must make choices. We must live every day making food decisions and hope that our diet is a healthy one even if the experts can’t help us. No wonder we see endless variety in dietary advice and “experts” of all persuasions.

OUR GOAL: Design a diet strategy that minimizes the liver workload

THE PROBLEM: The liver experts don’t offer effective diet advice

(click here for a pdf with all the science references)

Currently, the experts who treat liver disease (AASLD), recommend no specific diet for liver health. There are not enough well-designed clinical trials focused specifically on the liver to give the organ experts confidence to make official dietary recommendations. This creates a serious dilemma. As patients we don’t have that luxury. We must make choices. We must live every day making food decisions and hope that our diet is a healthy one even if the experts can’t help us. No wonder we see endless variety in dietary advice and “experts” of all persuasions.

THE GOAL: Design a diet strategy that minimizes the liver workload

The Fatty Liver Foundation recommends a diet high in oleic acid (omega 9) unsaturated fat (30%), primarily from extra virgin oil, low in saturated and trans fats (7%), with a omega 3 and 6 fatty acids approximately equal (8% each). Protein is about 20% of calories and carbohydrates are primarily in the form of fruits, non-starchy vegetables, and whole grains (27%). Simple carbs, such as sugars and refined grains, are minimized. The goal for salt intake is about 70% of the USDA recommendation. Processed foods and red and processed meats are avoided. (see this pdf for the research supporting this strategy)

Nonalcoholic fatty liver disease (NAFLD) affects approximately one third of adults in the United States and is the most common cause of chronic liver disease worldwide. About 20% of patients develop the more serious steatohepatitis (NASH) which is becoming epidemic as a result of the rising rates of obesity and metabolic disease. Emerging data suggest weight loss of greater than 10% of body weight is beneficial in resolving steatosis and reversing fibrosis due to NASH.

The liver disease specialists don’t have enough proof that they are willing to endorse a specific diet, so keep that in mind as you listen to the sales pitches. There are thousands of claims about food. Here we are trying to give you the most complete picture that we can, but just remember, if someone is selling you something, they have an agenda and real evidence is hard to get.

As patients where do we look for dietary guidance?

We understand the challenge for science to provide specific and verifiable data, but as patients we still have to live each day and we make decisions about our diet by making use of whatever information is available to us. We also must live within the cultural and food availability situations that we find ourselves. 

It is very difficult to do effective random, blinded, controlled trials (RCTs) of the diets of humans. There are myriad ethical and cultural concerns with human experimentation and the human diet is vastly complex within different cultures and practices. In our role as the voice of the patient, we believe that a position of offering very limited guidance is inadequate so we are providing this information as a patient resource for those who seek to understand the components of diet and available research which we believe offers a coherent view from which to make decisions about diet. The goal of our lifestyle strategy is not to diet but to adopt habits that are fundamentally healthy long term and probably contribute to a healthier liver and a better life.

Making the best choices we can with the information we have

A lifestyle that is fundamentally healthy is built on a vast series of small choices made each day over a lifetime. It is a pattern of behavior based upon choices which are, on average, neutral to healthy while minimizing ingesting things that compromise function.  There is no one size fits all solution. Human metabolism is quite robust and is able to accept a wide range of inputs and to use them to sustain bodily functions.

In our role as a supporter of people concerned about liver health, our goal is to support a lifestyle which minimizes the work that the liver must do to sustain our lives. Conceptually, when any of the parallel processes taking place within a liver cell is either oversupplied with or denied those dietary elements that it needs to maintain a stable response we have failed in that goal.  In making decisions about food, the goal is stability of function, stability of supply, and minimizing toxins. A sick liver benefits from a strategy of making it do as little work as possible.

Talk to your doctor

All patients should discuss dietary strategies with their doctor. This information cannot substitute for guidance by your physician. This material provides research-based information that will help you better understand your doctor’s advice but cannot be relied upon for personal health decisions.  Information is critical to help plan and implement a strategy to adopt lifestyle change but there is no single solution to decisions about diet and this information is therefore incomplete and may well be proven to be incorrect as research is performed in the future. This discussion provides information from a health perspective broadly which can inform choices about what constitutes a liver supportive diet.  A broader benefit is that this approach provides a holistic regimen which benefits many co-morbid conditions such as diabetes and cardiovascular health as well.  In many ways, what is good for the liver is beneficial for the body as a whole.

It is important to remember that your doctor may have little nutrition education.  We rely on them, but many are unprepared to really help us with diet decisions. Current medical education does not provide much focus on the issues of diet. This paper contains references to research which we have relied upon in developing it so you may be able to use it to engage your physician in the science argument about various aspects of diets. The material presented is not exhaustive or necessarily authoritative but is a coherent way to approach the lifestyle challenge.

As I write this I see the covid numbers are rising again. I hear people in denial, it could never happen to them. Today I have something equally life threatening to write about. It is not about Covid. It’s about ANOTHER little recognized epidemic. I lived it. I will be very happy if this resonates with just one person.

Here’s my story.

Christmas Eve 2013, I was feeling pretty proud of myself. I was on my way to a healthier life. Earlier in the year I joined my local YMCA. I exercised 6 days a week. I was eating healthy and watching calories. All in an effort to lose weight. I had been overweight since I was a child. Smaller clothes was just a small part of why after 30 years I was losing weight. Feeling good was a great reason but what gave me real motivation was the fact I wanted to be a living kidney donor for a family member. I had lost 96 pounds in 7 months. Then I woke up with what I thought was the flu. By evening I thought I was doing better. When I got sick and vomited up a huge amount of red blood. I found myself in my local ER where I was literally bleeding to death with no clue why. I was taken to the back where I was still very much awake and scared to death.

This is what you will find here:

• Non-technical explanation of how your body actually works
• How the liver develops disease over time
• Why fats are a critical source of fuel for your cells
• How the liver manages triglycerides
• How the course of fatty liver disease depends on triglycerides and carbohydrates
• How the kind of dietary fat you use matters
• Information by a liver patient for liver patients
• Information about diet based upon bio-chemistry not fads

We are a nonprofit foundation and we do not represent anyone but the patient. If you are looking for advice on supplements or quick fixes this is not the place for you. We offer extensive information about the body in general, the liver specifically, and we recommend lifestyle strategies that have worked for me specifically and which I believe are valuable for anyone concerned about liver health to be familiar with.

Terminal illness is a fate that awaits us all. We know not the pathways of our personal  journey only that we will take one of those paths in a time not of our choosing.

I live in the land of the chronically ill. It is that time between health and end stage disease. The Foundation's niche is fatty liver disease but chronic illnesses of many kinds are passengers on the same train.

I deal with the newly diagnosed who are frightened and confused. I scheme ways to hold the devil back with stalwart warriors who fight for life. I comfort those for whom the journey is too hard and who are dying a death of despair. I walk with people who are triumphant after they receive liver transplants. I see the length and breadth and depth of this disease and as a society I see that we manage it badly.

Post 11: Living with cirrhosis.

I often feel like living with cirrhosis is like living an exaggerated life.

The peaks are higher, the valleys are lower, and the edges between the two are so very much sharper. Each decision you make takes on an exaggerated new significance – an unhealthy food choice doesn’t just mean a chance at gaining an extra pound or two – it can mean noticeable swelling from the excess sodium. Not being hypervigilant about germs doesn’t just mean a chance at catching a seasonal cold – it can mean a hospital stay from virus-induced complications. Each choice, each day, becomes magnified under the lens of your cirrhosis diagnosis.

Adversity often feels overrated. Yes, it builds character, and I’m a personal example of how going through incredibly hard times doesn’t have to leave you feeling defeated, it can help you build a story of personal heroism over enormous challenges. Yet… adversity is still so darn HARD when you’re in the midst of it, isn’t it? Telling someone to stay strong, that things will get better, that it will build character – those things mean very little, when life is in a very dangerous, precarious, uncertain place.

But those clichés really are true. Hardship leads to becoming a more resilient person. My daughter asked me once, if I had magic wishes from a genie, would I use one to go back and fix things, make it so that I didn’t ever get sick? And that is one of the hardest questions that I’ve ever considered. Because… Oh, how I’d love to not deal with the day-to-day stress and vigilance that come with being a cirrhosis patient. To be able to toss away the cloak of worry that rests on my shoulders, always, that reminds me to make careful choices, to be aware of how I’m feeling, to mentally keep a running tally of symptoms and side effects to mention at my next hepatologist appointment. Yet, if I am perfectly honest, and I know it sounds crazy, but… I’m not sure that I would change that part of my story? Because facing death – really, really facing it – and all of the incredibly complicated feelings that come along with that as you realize you have a disease that could end your life in an instant… Well, it somehow lifts a veil on the world. Everything that matters comes into focus. You live differently. You live with a passion, because you know that at any time, things could be otherwise.

You can get mad, or you can move along with living life in spite of the adversity in your way – and you don’t have to live with a chronic illness to understand that. When you recognize that a challenge is out of your control; when there is no fix, or solution, or cure – that is when you have to change yourself, and change your way of thinking about the problem, so that you learn to live in spite of it.

Part of living an exaggerated life is learning to deal with things in new ways. I was diagnosed in mid-2016, just a couple of months before my daughter turned 6 years old. Her dad had left a few days before the previous Christmas – not because I was sick, but it was definitely an added reason. My mother was my caretaker at the time, but she also juggled several part-time jobs that she’d taken on, to help me cover my bills. So, while my little girl was learning her letters and numbers while away each day at school in kindergarten – at home, she was learning how to call 911, memorizing our address, and deciding which neighbors would be most helpful in an emergency if she couldn’t find my phone. It felt heartbreaking, to put that burden on her; but it was necessary for her to learn what to do if something happened to me, since she was the person who was home alone with me the most.

Another part of life that became an exaggerated parody of what it had been before, was dating. I had spent 11 years with Abby’s dad, and then a couple of years recovering enough from illness to venture back into having a social life again. I slowly rekindled old friendships, keeping only the ones that were compassionate and understanding about my new limitations and frequent last-minute cancellations. But dating? Oh boy. Each potential date brought layers of anxiety – A casual “meet up for drinks” date was no longer an option. A dinner date could be problematic, since my dietary restrictions made it hard to find safe meals when dining out. Something exciting and fun like concerts or festivals or sporting events could be exhausting, and I’d never know if I’d have the energy to attend something like that by the time the weekend rolled around. I eventually settled on simple mid-morning coffee dates, but then the anxiety would be back all over again when it was time to consider date number two.

But, I’m learning that life is just going to be messy sometimes, no matter how hard you try. Honestly is better than hiding away. And I can’t learn from my obstacles until I face them and try to overcome them. Because with so many things that can, and regularly do, go wrong in my life – anxiety is kind of a given. Since I can’t completely get rid of all of these exaggerated complications, I might as well learn to make them work for me.

I’ve learned that it’s not the actual events that happen to us that matter the most – it’s how we think about them. Each of us have the ability to write our own story in our heads, to frame a situation in a way that makes us a victim, or a conqueror, and to move towards a dead end, or a happy ending. My life took a major turn from what I’d planned - 2016 was quite the plot twist, that’s for sure. But as I adjust to this new, exaggerated form of my story, I’m learning that cirrhosis does not, ever, have to be a dark cloud over my travel though life. We all, every single one of us, can harness our hardships into a storyline that creates a triumphant new beginning. Cirrhosis might have created an abrupt end to my “old life,” but it’s only the beginning of a new story that I am determined to make into a beautiful one.

Fatty Liver & Liver Cirrhosis Are At Epidemic Levels!

• 100,000,000 Americans have a fatty liver.  Most don't know it.
• 20,000,000 will develop liver fibrosis disease or NAFLD (nonalcoholic fatty liver disease) as a result.
• 5,000,000 million will progress to liver cirrhosis or NASH (nonalcoholic steatohepatitis) and possibly end stage liver failure.  
• Some will be lucky enough to be listed for a transplant, the only cure for late stage liver disease, but 30% of those listed will die waiting.  Death by liver failure is long and difficult.  
• We want to help you avoid this kind of death by helping you understand how you may be killing yourself slowly.  And, what you can do about it.
• If you are already ill, we will do our best to help you with that process.

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Our Mission

To improve the diagnosis, treatment & support of Americans with fatty liver, NAFLD or NASH through awareness, education, screening and patient advocacy.

Click here to learn more.

We Advocate Early Screening

Typically, nonalcoholic fatty liver disease (NAFLD) and nonalcoholic steatohepatitis (NASH) are silent diseases.  They have no symptoms. Even if cirrhosis has developed, there are often no symptoms until the liver has become so damaged that the only option is a liver transplant.

There is currently a quick, easy and economical method to screen for fatty liver disease called a FibroScan.  Unfortunately, the current medical standards policy is not to screen for liver disease.  And, unless you are sick and have symptoms, insurance probably won't pay for the scan, even if you're lucky enough to have a testing system in your area.

The Fatty Liver Foundation is championing a nationwide program to provide liver screening services in cooperation with Liver Care Canada and Echosens, the manufacturer of Fibroscan, to make it possible for people who have a concern for their liver health to get an inexpensive scan.  Since insurance doesn't normally cover screening for people who aren't sick yet, it will be on a private pay basis.  However, as a nonprofit foundation, we believe we can deliver this service at an affordable price.

Click here to learn more.

If you would like to watch some very good videos about liver disease,

click here to take a video tour

Post 8: Shame and Cirrhosis

For most people, the diagnosis of a serious, life-threatening, chronic disease is a very scary experience. But after getting that type of news, most people are able to gather comfort from friends, family, sometimes even strangers. When they tell those friends, family, and strangers about their diagnosis, the first reaction people usually give is a hushed, “Oh, I’m so sorry to hear that.” That might be followed by a hug; A comforting word or prayers; An offer of help, support, or advice; But with cirrhosis, sharing our diagnosis with others is often, sadly, a drastically different experience.

After the unexpected shock of learning that I had cirrhosis in 2016, I quickly learned to recognize the signs and symptoms that meant I needed to call my doctor. I learned to recognize which foods and drinks had hidden sodium in them as just one example of what I needed to know. Unfortunately, I also learned to recognize “The Look.”

I would guess that every single patient who has been diagnosed with cirrhosis knows “The Look.” It’s so common for me, that it could almost be comical, if it didn’t regularly make me feel so defeated.

The first time I experienced “The Look,” I didn’t even actually see it. My mom had taken on a part time job as a waitress, to help cover my mounting medical bills when I had to stop working. Her regular customers knew that I’d been getting seriously ill over the past 9 months. After I had a diagnosis, she finally had answers to give when people asked how I was doing. But when she told people that I’d been diagnosed with cirrhosis, instead of the comforting words or sympathetic understanding that she’d expected from customers that she considered friends – customers who knew me – she heard things like, “Oh, I’m sorry, I didn’t know she was an alcoholic.” Or a blunt, “How much did she drink?” Almost accusatory statements, with a look that said this news was unfortunate, but that obviously cirrhosis is a disease that I caused myself. She was shocked! She’s been a caretaker for many people over the years, and had never encountered responses like this.

I quickly realized how few people understand liver disease. The first thing anyone thinks of when hearing the word “cirrhosis,” is alcoholic. Every time. A few people, especially older people, also associate it with Hepatitis C. Absolutely no one I’ve ever met has heard of things like hemochromatosis, Wilson’s disease, or autoimmune hepatitis. Very few people have even heard of fatty liver, or NASH. Everyone just thinks of cirrhosis as a disease for old men who’ve spent their years chugging away on a whiskey bottle.

I learned to expect this reaction from “regular” people. Because I had to admit to myself that I didn’t know any of these things either, before my diagnosis. So, as weary as I started to get, when time after time I’d get that look, that was part accusing and part pity; That look that said, “Oh, I’m so sorry, but it’s your own fault, you know…” - I tried to be understanding, and continue patiently explaining that cirrhosis is the end stage of a process of damage to the liver, that the damage can come from over a dozen different causes, that everyone with cirrhosis isn’t an alcoholic, and that even if they DID get cirrhosis from alcohol use… does that really even matter much?

What I didn’t expect was to continue getting this type of uninformed reaction from people in the medical community. My primary care doctor wouldn’t even believe me that my cirrhosis wasn’t related to alcohol, until he had written confirmation from my out-of-town hepatologist. I dread going to the ER, because it always, always starts with “The Look.” I’m in a room, lying on a bed, the nurse comes to do vitals, and get basic information. They ask for a list of known health conditions. When I get to liver disease, there’s an abrupt change of tone as they ask “What type of liver disease?” I take a deep breath, and say, “Cirrhosis.” Then, The Look, and the same question, without fail, every single time: “From drinking?” They never ask something less loaded, such as “Do you know the cause of your cirrhosis?” It’s just always this sudden shift in their opinion of you, that look that says “Oh you’re one of those people,” and an instant judgement call that whatever problem you’re being seen for that day – even if it’s not related to liver disease at all – that it’s probably something else that you yourself have caused; from bad judgement, poor moral character, unhealthy choices. The Look tells you that you’ve been judged and found lacking. Even when I tell them that my cirrhosis diagnosis has nothing to do with alcohol, they give each other a “That’s what they all say” look, and continue asking things like how much I drank, do I still drink, when was my last drink? At first, I thought maybe this was just me being paranoid, born of the frustration at explaining a confusing diagnosis. But everyone else in my family has seen it too. And I’ve heard the same story from so many other patients. It’s incredible, how pervasive and consistent it is.

This attitude, this idea that cirrhosis patients deserve their disease, the look of shame that we get when we say our diagnosis out loud – I know that many, many other patients feel a stigma from this too, which discourages us from speaking up about our illness. It causes us to keep quiet about our diagnosis, often suffering in silence instead of asking for help from our friends and family. But it also causes us to be less pro-active with our own healthcare, shamefully stuffing down our questions, when our doctors treat us as though we are to blame. Because, I think that most people who face a life-changing disease of any type have a moment or more, where they wonder what they did to deserve this fate? Was it skipping the gym and regular checkups, or was it overindulging in foods or drinks? This makes it even easier to fall for the shaming you get from your friends, family, neighbors, and even doctors.

Sometimes I don’t know how it can be true, that here I am, living with a serious chronic disease that has the potential to kill me. Even on the good days, that knowledge adds a heavy weight to my life. Yet… My life is still beautiful. Because each day, with purpose, I create a life that’s beautiful. But oh, my… How much more beautiful life could be, if I didn’t have the added weight of “The Look,” and the unnecessary stigma attached the word cirrhosis. Which is why I’m beginning to work so hard to change that.

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Maybe I didn’t have to be a statistic.

Maybe I didn’t have to be one of the 4.5 million people diagnosed with liver disease in 2016.

Maybe I didn’t have to be one of the unlucky liver disease patients who goes untreated until progressing to stage 4 cirrhosis.

Maybe I didn’t have to face liver failure, grim survival odds, and spend over a month fighting for my life in the hospital.

But that’s the story that did happen to me. And no wishing or “what if”-ing can change that.

If I hadn’t been one of the millions of Americans who were uninsured, maybe I would have had an established relationship with a primary care physician. As a hard-working momma building her own business from home, there were almost no options to purchase private insurance, so as a healthy woman in her mid-30s, I went without. This worked out ok…. Until it didn’t.

I ignored red flags for months, as I got sicker and sicker. If I’d had insurance, I would’ve definitely gone to see my doctor in those early days. But I didn’t. My episodes of nausea and vomiting got more extreme, and lasted longer. My mom suggested going to the ER, since I didn’t have a doctor’s office to go to. If I’d had insurance, I would have gone. But, I didn’t.

Eventually I had an episode that lasted over a week. A full week of not keeping anything down, and barely getting out of bed. At that point, I was too tired to resist my mother’s pleas to go to the ER. Once there, I was full of anxiety - questioning every test and scan they wanted to do, so worried about the bill I’d get later that I didn’t have time to worry about how seriously ill I was. I could tell that things were pretty bad, by the way the nurses started rushing in and out more rapidly, speaking to each other in hushed tones. But in my head, I was just counting up the dollars as they drew more blood, and hooked up IVs, wires, and monitors. When the doctor finally arrived and informed us that I would need to be admitted – if I’d had insurance I might have agreed easily, as it was pretty obvious at that point that I needed medical care. But I didn’t.

I cried and argued and then cried some more. I put up such a fight out of fear – I’d never spent the night in the hospital before. But most of it was fear of not being able to afford a hospital stay! Luckily, the hospital had a social worker visit my room immediately after being admitted, and they were able to sign me up for Medicaid, and that would start covering my medical bills immediately. The relief washed over me. But it was short-lived. Because while I thought that having insurance would help me solve this medical mystery happening to me, it didn’t.

Even though I finally had insurance, seeing a doctor was still complicated. State insurance offers really limited choices of doctors, and I was assigned a primary care physician at a local clinic that was overburdened and overbooked. We then started a frustrating process – I’d be released from a hospital stay, we’d call to set a follow-up visit, my actual assigned doctor would be busy, so they’d make an appointment with another nurse practitioner or available resident. I’d go to that appointment, try to explain my whole history quickly to someone I’d never met, knowing I’d never see them again, they’d give us a blank stare, followed by something like, “you are way above my pay grade, you’ll need to see your actual doctor for this.” But the doctor was always too busy, so I didn’t.

Over and over, we did this routine. I believe that if I’d had a primary care doctor from the beginning, someone who could get to know me, see the decline in my health in each visit, who was invested in actually figuring out what was going on – I would not have gotten as critically ill as I did. But I didn’t have that, I never even got to see the same person more than once, and didn’t meet my own, assigned doctor for months.

Eventually I had what I call my “grand finale” of hospital visits – I was admitted to our local hospital in such bad shape that I barely knew my own name. I had sepsis, liver failure, adrenal failure, and a long list of other scary stuff happening. I live in the 11^th largest city in Washington state – not a huge metro area, but not some small town either. Yet we have no hepatologists in our entire county. There I was, in liver failure and needing a liver biopsy, but no doctor in the area was trained to care for me. It took 11 long days of waiting in my local hospital, before they would transfer me to Seattle. It scares me to think back on what critical condition I was in, and what could have happened in those 11 days without any actual care for my failing liver.

But I was lucky – the hospital that I was sent to had a liver transplant center, and an amazing hepatologist who immediately started finding answers and putting me on a path to stabilizing. Each time I make the 3-hour trip over to Seattle to see my hepatology team for follow-up appointments, I remind myself that while it truly is a big burden to make such a long trip both ways just for one doctor’s appointment – I’m extremely lucky to have access to a hepatologist at all. Some people don’t even have a transplant hospital within driving distance. As the epidemic of fatty liver disease grows, our country is greatly in need of more hepatologists to treat those patients as they get sick.

There is a quote I keep up on my wall – “You either get bitter or you get better. It’s that simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you.” – Josh Shipp. This quote guides me often in my journey with liver disease. But getting better involves our doctors making us part of the team. To give us the knowledge and tools to participate in our own health and wellbeing. Since there are so few hepatologists, and since liver disease is seldom the only illness a patient is dealing with – we as patients need to be able to advocate for ourselves when seeing other specialists. We need to know enough about diet, about which medications are safe and which to avoid, what questions to ask before procedures, so that we can work together with our team of professionals in keeping ourselves as well as we can be. Because with all of the scary stuff that happened, with the lack of consistent medical care, there were a lot of near misses, and I could have died.

But I didn’t. And as long as my hepatology team remembers to include me, and keep me informed enough to manage my own care, to know now when those red flags need attention, and to know that I have a doctor who can help me – I can keep it that way. 😊

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