'We must do better': Celebrity cases pull autoimmunity epidemic into limelight
Every so often, autoimmunity hits the mainstream media. Usually this happens when a celebrity bravely uses their place in the limelight to raise awareness by publicly sharing news about their diagnosis.
Thanks to celebrities like Christina Applegate, Caroline Wozniacki, Selena Gomez and many others over the years, we are all a little wiser about the personal toll of living with autoimmune diseases such as multiple sclerosis, rheumatoid arthritis and lupus.
Last month, Bob Saget’s death became the reason why the topic of autoimmunity has come up again. His story involved the tragic loss of his sister, Gay Saget, at age 47 from scleroderma, the hallmark of which is tightening, or fibrosis, of the skin. The vascular abnormalities that lead to these skin changes can also damage internal organs, especially the esophagus, intestines, lungs, heart and kidneys.
An active champion of fundraising and research, Saget sat on the board of the Scleroderma Research Foundation, helping to raise more than $26 million for research. In one of his last interviews prior to his death, he spoke emotionally about raising awareness to honor his late sister’s memory: “I can’t watch what happened to my sister happen to more people.”
Scleroderma, also known as systemic sclerosis, is a rare disease, believed to affect approximately 30 out of one million people annually. Other autoimmune conditions like MS, RA and lupus, among many others, are not so rare.
Today more than 30 million Americans, or one out of five, live with an autoimmune condition, a vast cry from the significantly lower ratio of 1 in 400 affected a mere two generations ago. These numbers don’t include the surge in patients suffering from persistent COVID-19-related symptoms, estimated at 10% to 30% of all those infected with the virus and believed, at least in some of those cases, to be caused by an autoimmune reaction. With research showing a growing prevalence of ANAs — the main biomarker indicative of autoimmunity — triggers of autoimmune disease, like viruses, toxins and diet, will only continue to put more people at risk.
Autoimmunity is the epidemic no one is talking about, or at least not talking about enough. More than 80 conditions and disorders fall under the autoimmune umbrella and while every diagnosis may be different, on a biological level they are quite similar: The body turns on itself, causing the immune system to attack otherwise healthy organs, tissues or cells. Rarely, however, does this come with the kind of death sentence suffered in the case of Gay Saget, who died 3 short years after her scleroderma diagnosis.
Instead, what follows for most is a lifetime of managing mysterious “invisible” symptoms that can be severely debilitating, from fatigue, headaches and brain fog to pain, anxiety and skin and digestive problems. Unpredictable flares that come and go can reduce productivity, affect emotional wellbeing, and alienate people from their family and friends.
Available autoimmune treatments fail three out of four people. New research underway in the UK is trying to change that by looking at DNA to uncover disease pathways for better matching patients to therapies, as well as guiding research for effective, new treatments. In the meantime, drugs like prednisone and cortisone provide temporary relief from some of the symptoms yet do nothing to improve quality of life in the long term.
We must do better. This involves a massive shift in mindset to acknowledge the central role that diet, lifestyle and environment play in the onset and course of autoimmune disease. Published research has established that only 20% of our immune system is controlled by our genetics. The rest can be any combination of factors in a “haystack” of variables like food, nutrition, lifestyle, toxins, UV light, stress, sleep, pathogens and others.
In the absence of a cure, and with even the best of current treatments far from optimal, turning our attention to how lifestyle changes can help co-manage autoimmunity is imperative. Real world evidence can guide personalized interventions to help replace our current “trial and error” approach to drug treatment and lifestyle adjunctive care and even — if the signs and symptoms of autoimmunity are caught early enough — drive prevention.
Accepting that the multitude of external factors in our lives can in fact trigger or influence the course of autoimmunity is one big step we can take toward helping patients understand what is within their grasp to control. Our understanding of conditions like scleroderma has come a long way since Gay Saget was diagnosed in the 1980s, thanks to growing medical knowledge, continuous research and passionate advocates like Bob Saget. Our ability to diagnose and treat individual cases of autoimmunity, including those that are rare or undefined, will hopefully only keep getting better.
In the meantime, tackling the growing epidemic of autoimmunity must also include helping those affected learn what steps they can take to improve their quality of life. This goes for those living with autoimmunity with or without a confirmed diagnosis, which can take up to 5 to 7 years after symptom onset, depending on the condition.
Evolving research about the human immune system continues to help us better understand how interventions based on personal lifestyle triggers can support treatment today. We have seen this awareness about lifestyle become standard of care for heart disease and diabetes. It is time this approach is embraced for autoimmune disease.
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Nicole Bundy, MD, is medical director at Mymee Inc., which provides specialized remote care and support services to people with autoimmune disease and long COVID. She is a licensed, board-certified internist and rheumatologist with 10 years of experience treating a wide variety of patients with rheumatologic diseases in both private practice and academic rheumatology settings.