Enduring Spirit: Remembering Claire Wineland's Fight Against Cystic Fibrosis

June 15, 2024

Story at-a-glance

Cystic fibrosis (CF) is a severe genetic disorder marked by excessive, thick mucus in the lungs and other organs, leading to chronic inflammation and reduced lung function, necessitating daily breathing treatments
Claire Wineland, inspirational speaker and YouTube sensation, was diagnosed with CF at birth. She died September 2, 2018, from a massive stroke following an otherwise successful lung transplant. September 2, 2019, YouTube Originals released the documentary “CLAIRE,” directed by Nicholas Reed
While filled with chronic illness, Wineland’s life was a testament to how to live life well, with purpose and gratitude
Nutritional support, including vitamins A, C, D, E, zinc, omega-3 (DHA), garlic, ginseng and curcumin, is commonly recommended for CF patients. N-acetylcysteine (NAC) can also be helpful by reducing inflammation, breaking down mucus, enhancing antibiotic effectiveness, and supporting immune response
Reducing dietary intake of linoleic acid (LA) is advised for CF patients due to its potential to exacerbate disease symptoms through mitochondrial dysfunction

Cystic fibrosis (CF) is a progressive and terminal genetic disease that causes an overproduction and buildup of thick, sticky mucus in the lungs and other organs that lead to chronic inflammation and, eventually, a deterioration of lung function.

The disease requires daily breathing treatment for up to five hours a day, and many CF patients end up spending a lot of time in the hospital due to respiratory distress and chronic infections. Pancreatic and gastrointestinal complications, including malabsorption of proteins and fats, and chronic liver disease are also common. The median survival age is about 35 years.¹

Claire Wineland’s Legacy

The 2019 documentary featured above, “Claire — The Documentary,” is a potent reminder of how we need to live life to the fullest, even though we might die tomorrow. I really don’t know of any better example of that than Claire Wineland, an inspirational speaker and YouTube sensation who died September 2, 2018.

Claire has been a tremendous inspiration to me and a regular reminder of what is possible and why we were born on this planet to begin with. I hope you find as much value in her life as I did. I sincerely hope that her example of an exemplary life in the face of onerous physical handicaps could be a great catalyst for you to escape fear and find more Joy in your life.

Wineland was born with CF and spent about a quarter of her life in the hospital. At age 13, she founded the Claire’s Place Foundation² to help families with children who, like herself, struggle with CF. She also started a YouTube channel where she shared her life with unending optimism.

In 2016, she received the World of Children Youth Award³ for her foundation’s support. That same year, Wineland appeared in an episode of “My Last Days,” (video above) a limited CW docuseries hosted by Justin Baldoni, featuring people living with terminal illness.⁴

“My name is Claire Wineland. I’m 18 years old,” she said. “I’m living with something called cystic fibrosis. Doctors say I have around a year left to live, but that doesn’t really matter to me because death is inevitable. But living a life that we are proud of, that is something we can actually control.”

Wineland’s mother told Baldoni she was convinced her daughter came into the world with a mission to share the message of “what it’s like to be blessed with life.” “I think she felt, knowing she had a shorter life, she wanted to do more with it,” she said.

“I’ve always loved the idea of bringing life into places where people think life doesn’t really exist,” Wineland said of her idea to start posting videos of her hospital stays on YouTube. “Some of my favorite moments of my entire life were when I was in the hospital.”

In late October 2018, Wineland underwent a lung transplant that would have extended her life another five years if successful.⁵ The surgery took nine hours and went well. However, shortly afterward, she suffered a massive stroke and was placed in a medically induced coma, from which she never emerged. She was 21 when she passed.

In the video below, taped about a week before her surgery and untimely death, Wineland gives thanks to the thousands of people who donated nearly $268,000 to her GoFundMe campaign to raise the funds needed for the surgery that she and her family otherwise could not afford.⁶

Living a Life of Purpose

According to Wineland’s father, she’d always been a positive little girl, but something happened when, at the age of 13, she went into lung failure and slipped into a coma for 17 days. When she emerged, she had a new level of acceptance about her, and an attitude of wanting to enjoy life as much as she could, all while knowing her days were numbered.

“The only thing you’re told when you have an illness is, ‘Oh, I’m so sorry … Your life must be horrible.’ Those exact words, over and over and over again. That gets so cemented into your consciousness. What kind of weird belief is that?” Wineland said.

“Most 18-year-olds do not have to deal with what I have to deal with specifically, no. But everyone has to deal with their own pain. The absolute truth is that I don’t think the pain I’ve been through is any more severe than the pain any other individual has been through. It might be more physical, but I’ve also had the incredible gift of having people who genuinely love me giving me so much mental stability and strength.

We have to realize that we are part of something bigger. What happens in our world, what happens in our society, is very literally a part of us because we’re so influenced by it, and it is so influenced by us … We can’t put ourselves in a bubble. We can’t detach from the world that we live in.”

In addition to sharing her life on YouTube with endless optimism, Wineland had bigger goals: Public speaking. During the filming of “My Last Days,” Baldoni surprised her with private lessons by speech coach Richard Green, who agreed to help her polish her public speaking skills and craft a speech.

When asked by Green what she would want her audience to get from her speech, she replied, “I’d want them to have a moment of clarity. Realizing they actually have power in their happiness and in the way their life goes.” She ended up giving that speech at the Life Is Beautiful Music and Art Festival in Las Vegas, September 2015.⁷

“I can stand up here and tell you I am genuinely proud of my life,” she said during that speech. “I am so proud to be alive. I’m not saying that I don’t feel pain … sadness and suffering and loneliness, because that’s what it means to be a human being. I’m saying that pain, that loneliness and that sadness is beautiful …

We live in a society that benefits off of us continuously looking for happiness, for dreams and goals ‘out there.’ If we say ‘no, we’re not going to go looking out there for happiness; we’re alive and that is all we need,’ then we are beating the system! And we’re living lives we can be proud of. We’re living lives that make us happy.”

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Finding Your Unique Purpose

Optimism and having a sense of purpose in life has actually been scientifically shown to have direct benefits on health and is associated with increased life expectancy. Wineland was herself a testament to this, as she never expected to make it past her teens.

As explained by Wineland, your purpose is really all about what you believe you can give; how you can make a difference. So often, people get stuck in the limiting mentality of “I’m just one person, how could I possibly make a difference?” Well, you can. You might not be able to help everyone, but you can help some.

What are you enthusiastic about? What revs your internal engine? What comes really naturally to you? What do you enjoy doing most? Exploring your answers to these questions can help you discover your purpose, if you feel you haven’t found it yet.

Trust Yourself to Take Chances and Make Brave Choices

Wineland’s insights echo the principles in my upcoming book, “The Power of Choice.” Up until now, all my books, nearly all of which have become best-sellers, have focused purely on diet and lifestyle strategies for physical health and longevity. “The Power of Choice” is also, ultimately, about health, but approaches it from a different perspective — that of connection to your consciousness.

One of the key lessons from this book is that life is about creating Joy. You hold the ultimate authority over the experiences you encounter, as they are entirely shaped by your individual choices. If your life lacks fulfillment, then it could be your true Self telling you to make different choices that could steer you toward a more satisfying existence.

I intentionally capitalize “Self” and “Joy” to underscore their deeper, transcendent nature. Self represents unlimited, immortal consciousness, while Joy denotes a profound state of contentment that emanates from within yourself.

Ashley Armstrong’s journey as the cofounder of Angel Acres Egg Co. and the Nourish Cooperative⁸ is another inspiring example of how prioritizing Joy in your decision-making can lead to a more purposeful and fulfilling life.

The video above, taken from our previous interview, describes how Ashley made a radical career change to pursue her passion for regenerative agriculture. By making this brave choice, she was able to reclaim Joy, as well as improve her health and benefit other people.

You Need Sufficient Cellular Energy for Decision-Making

In the video, Ashley touched upon the importance of having enough cellular energy to support the brain’s energy-intensive decision-making processes. This is because your brain consumes about 20% of your body's energy despite being only 2% of its weight.

Various factors, such as having excess linoleic acid, high levels of estrogen and being exposed to endotoxins, can deplete your cellular energy and hinder your ability to make healthy life choices. It’s important to avoid these pitfalls to optimize your mitochondrial function, which is a central factor, as the energy produced by your mitochondria is virtually identical to the energy that created the material universe.

Improving your mitochondrial health boosts your ability to connect with the Source of your true Self, which is where true Joy resides. This is also where your intuition and inner knowing lie, which are always nudging you toward the direction of your authentic self and, ultimately, to a path that will bring you the most Joy.

Needless to say, having sufficient cellular energy is also paramount for maintaining health and treating diseases of all kinds, even if you’re born with them.

Helpful Treatments for Cystic Fibrosis

My recent article about natural treatments for CF was motivated by the memory of Claire’s death. While CF is considered incurable, there are a number of alternative treatments that can be very helpful. A 2012 paper⁹ in the Journal of Pharmacy Practice reviewed several of the most commonly recommended nutritional supports for those with CF.

A scientific review¹⁰ published in 2022 also highlighted the role of N-acetylcysteine (NAC) in the clinical management of CF. Removing all linoleic acid (LA) from your diet and optimizing your vitamin D level are two additional foundational recommendations that I will address below.

Here’s a summary list of the nutritional supplements recommended in these two papers, along with guidance on selecting the best quality supplements:

Vitamins A and E — Many CF patients have poor absorption of fat-soluble vitamins such as A and E, due to malabsorption of fats. For this reason, supplementation with these vitamins is often recommended. As a rule, patients are advised to consume between 120% and 150% of the recommended daily allowance (RDA) of nutrients to prevent premature death from malnutrition.¹¹

Most people have poor gut health, and this is particularly true for CF patients, so make sure you’re using retinol (preformed vitamin A) and not beta-carotene. Retinol is found in animal products such as grass fed meat and poultry, liver, fish and raw organic dairy products like butter. This is the form of vitamin A your body can use, so make sure the vitamin A you buy specifies “retinol” or “retinoic acid,” and not just “vitamin A” or “beta-carotene.”

Selecting a natural supplement is also important when it comes to vitamin E. Studies have demonstrated that synthetic vitamin E has the opposite effect of natural vitamin E, such as increasing the risk of certain cancers rather than lowering it,^12,^13,¹⁴ for example. So, it’s important to make sure you’re getting a natural version.

What you’re looking for is “d alpha tocopherol.” Avoid all synthetic forms such as succinate, acetate and the racemic DL isomer. You want the pure D isomer, which is what your body can use. There are also other vitamin E isomers, and you want the complete spectrum of tocotrienols, specifically the beta, gamma, and delta types of vitamin E, in the effective D isomer.

Vitamin C — When it comes to vitamin C, you want to make sure it’s liposomal, as it will allow you to take higher dosages without causing loose stools. It’s also absorbed better.

While healthy people can typically get enough vitamin C from food such as red pepper, broccoli, kiwi, strawberries, citrus fruits, camu camu, rose hips or acerola cherries, if you’re ill, you need far more than what can be obtained from food (possibly except for acerola cherry, which contains 80 mg of vitamin C per cherry).

Vitamin D — Vitamin D also plays a crucial role in the health and management of CF, offering several benefits backed by scientific research. A systematic review and meta-analysis¹⁵ published in January 2024 revealed that CF patients typically have significantly lower levels of vitamin D compared to healthy controls, both in childhood/adolescence and adulthood.

Another study¹⁶ noted that vitamin D deficiency is particularly detrimental in patients with comorbidities such as cystic fibrosis-related diabetes (CFRD) and cystic fibrosis liver disease (CFLD).

Ideally, you’d want a vitamin D level of at least 60 ng/mL year-round. To reach that level, I recommend daily walks with minimal clothing for 30 minutes before and after solar noon, for a total of one hour. During summertime, that would be right around 1 pm.

While oral vitamin D3 supplementation is an option if you cannot get enough sun exposure, you’ll miss out on many of the other health benefits that sun exposure provides. You also need to make sure you’re taking vitamin K2 and magnesium when using oral supplementation.

Zinc — Supplementation at a dose of 30 mg per day has been shown to reduce the average days of antibiotic use, and a pediatric study using an antioxidant-rich multivitamin supplement containing vitamins A, C, E and zinc and other micronutrients found “modest improvement” in lung function.

Garlic, which has antibacterial effects.

Ginseng, which has antioxidant, antimicrobial and immune modulating effects — Aqueous extract of ginseng has been shown to be effective in inhibiting P. aeruginosa, a bacterium often involved in chronic pulmonary infections, including antibiotic-resistant strains.

Curcumin, which has antioxidant properties — Limited data also suggests it may increase CFTR-regulated channel activity in CF patients. CFTR is a protein that, when dysfunctional, results in the development of CF symptoms.

NAC — A precursor to your body’s production of glutathione (GSH), NAC also has an important role in the management of CF.¹⁷ It helps fight oxidative stress, reduces inflammation, breaks down mucus, enhances antibiotic effectiveness, fights bacterial infections, supports healthy immune responses and improves cell function.

Eliminate Linoleic Acid From Your Diet

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As important as supplementing certain nutrients might be, CF patients must also be vigilant about avoiding certain things. As explained in my in-depth review, “Linoleic Acid — The Most Destructive Ingredient in Your Diet,” linoleic acid (LA) — an omega-6 polyunsaturated fat (PUFA) — acts as a mitochondrial poison and the primary contributor to all chronic disease.

If you have CF, I strongly advise you to eliminate as much LA from your diet as possible. LA is found in most foods, by eliminating processed foods, condiments, seed oils for cooking, fast food and restaurant food, and conventionally raised pork, chicken and eggs. Ideally, you’d want to get your LA intake below 5% of daily calories, which is about what our ancestors used to get.

While there are no studies detailing direct harm caused by LA in CF, considering excess LA is a primary driver of mitochondrial dysfunction, there’s every reason to believe that it will have a detrimental impact on CF. Dysfunctional lipid metabolism, including LA metabolism, is also a characteristic of CF, so there appears to be a complex interaction with LA that could influence disease outcomes.

If you’re not sure how much you’re eating, enter your food intake into Cronometer — a free online nutrition tracker — and it will provide you with your total LA intake. Cronometer will tell you how much omega-6 you're getting from your food down to the 10th of a gram, and you can assume 90% of that is LA. Anything over 10 grams of LA is likely to cause problems.

Healthy fat replacements include tallow, butter or ghee, all of which are excellent for cooking. The table below lists several of the most commonly consumed oils and their approximate LA content.

Vitamin E Prevents Oxidation of LA

If you’ve been eating a high-PUFA diet for a long time, consider taking vitamin E regularly until you get your LA down to healthy levels. As noted earlier, CF patients need extra vitamin E anyway, and this is yet another reason to make sure you’re getting enough.

High LA levels increase a potentially dangerous process in your body called lipolysis — the liberation of fatty acids from your fat cells into your bloodstream where they are mobilized. This then increases the oxidation of LA, which is precisely what you want to avoid. Ideally, you want to keep LA in your fat cells until they metabolize it with peroxisomes. Vitamin E can help neutralize this damaging effect of LA.

Due to the high LA burden, few people can get enough vitamin E from their diet to suppress the oxidative destruction caused by LA unless they're supplementing with vitamin E. The good news is that since the supplementation is short-term, you're not going to need it the rest of your life. If you can keep your LA intake to below 5 grams a day for three years, it's likely you may not even need it at all, or at most, only a few times a month.

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