Imagine feeling unwell for months, years — even decades — and never knowing why.
Imagine family, friends and physicians downplaying or dismissing the signs and symptoms of illness.
Imagine the anguish of not understanding the suffering taking place in your body and the frustration of it not being addressed.
Dawn Green doesn’t have to imagine any of that. She lived it — bouncing from doctor to doctor for 35 years before her diagnosis of Hashimoto’s thyroiditis, an autoimmune disease.
Green’s road from ill to informed is extreme, but it encapsulates what millions of people with autoimmune diseases face. We know that patients, on average, see four physicians spanning more than four years before receiving a diagnosis and starting treatment.
Autoimmune diseases cover more than 100 conditions — some with familiar names like lupus, multiple sclerosis, rheumatoid arthritis, psoriasis and type 1 diabetes. In general, diseases occur when the body’s immune system attacks its healthy cells and tissues.
Common symptoms include chronic pain, persistent fatigue, fever and skin problems. The disease is often difficult to identify and is much more common in women than men. It inflicts depression and other mental health problems and financial strain. There are no cures.
Despite its prevalence — we estimate that 50 million Americans have one or more autoimmune diseases, and experts say every one in five individuals is likely to develop an autoimmune disease in their lifetime — this illness is surprisingly low profile.
Raising awareness remains a priority, and we must continue to spotlight what it means to have an autoimmune disease and what’s happening on the advocacy, education and research fronts.
Though autoimmune diseases remain difficult to diagnose, patients must be steadfast and direct with their healthcare providers. Those providers, meanwhile, should be supported with enhanced training to improve diagnosis measures while remaining empathetic and open to exploring the many types of autoimmune diseases.
Another crucial task is educating the public on autoimmune diseases. Even with statistics indicating that most people probably know someone with an autoimmune condition, the term can still draw a blank stare when mentioned.
Celebrities Selma Blair, Christina Applegate, Selena Gomez and Venus Williams are living with autoimmune diseases and have used their notoriety to help put a face on the ailment and normalize its name. The more people who become familiar with autoimmune disease, the better. Wider attention will lead to improved diagnosis and treatment and help raise more money for research and patient support.
Considering that a recent opinion piece in Scientific American called autoimmune disease an “epidemic,” elevated awareness and action is overdue. The column, co-authored by the Autoimmune Association’s Olivia Casey and National Institutes of Health scientist emeritus Frederick W. Miller, says autoimmunity needs to be a priority. “To keep it from destroying so many lives, we urgently need to understand these diseases better and find more effective ways to prevent, diagnose, treat and cure them,” Casey and Miller write.
Still, there are positive developments in the fight against autoimmune disease. Last year, Congress created the Office of Autoimmune Disease Research, which advocates had been seeking. Last September, University of Chicago researchers developed an “inverse vaccine” that reverses autoimmune symptoms in mice. Various other biomedical advances are raising hopes for future treatments and cures, and research into the link between the environment and autoimmune diseases is accelerating.
More funding and research in genetics, infections, early biomarkers and targeted therapies are needed in the fight against autoimmunity.
The road ahead is long, and far too many individuals are suffering and struggling. More will join them before we turn the corner. As we continue the conversation about autoimmunity, let’s salute those who persevere in the shadow of pain and misunderstanding and appreciate those who aim to ease the burden.
Rock star Glenn Frey, who died in 2016 from complications of the autoimmune disease rheumatoid arthritis, is remembered for the 1984 hit song “The Heat Is On.” We at the Autoimmune Association are committed to keeping the heat on for as long as it takes to ensure these diseases and the people who live with them are acknowledged, understood and addressed.
