How much do you know about autoimmune diseases?
If the answer is not much, then that might need to change. According to experts, approximately 50 million Americans, about one in five people, struggle with an autoimmune disease. When it comes to women, unfortunately, we are more likely than men to be affected, with some estimates claiming that 75 percent of those impacted in this country are women.
Some of the most common autoimmune diseases include alopecia areata, type 1 diabetes, rheumatoid arthritis, Hashimoto’s thryoiditis, celiac disease, Graves’ disease, and lupus. And it takes sometimes up to 4.6 years for doctors to provide a correct diagnosis of these illnesses.
The latter disease, lupus, impacts women most. Nine out of 10 people who have the inflammatory disease, which attacks healthy cells and tissues, are women. Where it hits home for us is that it disproportionately affects young Black women, and we develop lupus at a younger age than our white female counterparts. A less common disease, sarcoidosis, which causes the growth of a collection of inflammatory cells, is more likely to impact Black women as well. The American Osteopathic Association says that may have to do with the fact that Blacks tend to have more granuloma tissue.
In the effort to provide a bit more insight into how autoimmune diseases like lupus affect us, we spoke with Betty Diamond, MD, Professor and head of the Center for Autoimmune, Musculoskeletal and Hematopoietic Diseases, and the Feinstein Institute for Medical Research, as well as Virginia Ladd, President and Executive Director of the American Autoimmune Related Diseases Association, Inc. Here’s what they had to share with us — and you.
Are minority women disproportionately impacted by autoimmune diseases, in general?
Betty Diamond & Virginia Ladd: It is important to understand that not all autoimmune diseases are more common in minorities. Some part of the answer to, for example, why lupus is more common in minority women has to do with genetics, but there are clearly environmental factors and female hormones contribute to the increased incidence in women. The majority of autoimmune disease are thought to affect all races in the same proportions, however there are epidemiology studies needed to prove this. There are also some autoimmune diseases found to be more common in Caucasians and others that are more commonly found in Asians.
What tends to be the most common autoimmune disease impacting Black women specifically?
Lupus is the most common autoimmune disease impacting Black women and there is evidence suggesting that some of the genes that predispose to lupus protect against malaria, so there was an evolutionary pressure for lupus risk genes. Sarcoidosis is another example of an autoimmune disease that occurs more often in African Americans.
What are early warning signs that we should take notice of when it comes to these diseases?
Changes in sense of well-being, fevers, fatigue, aches, rashes, etc. The fatigue is usually much more than just being tired and more like being exhausted. The symptoms can come and go over a period so keeping track of symptoms and when and how they interfere with living can help the physician understand the seriousness of the impact on the patient. The patient might not fully disclose the level of fatigue to the physician in fear of being labeled lazy or too concerned with their health.
Speaking of lupus, a recent study found that there is a connection between Black women who have depression and an increased risk of having lupus. Why is that?
It is clear that lupus and some other autoimmune diseases are associated with cognitive problems or mood disturbances. It may be that the depression is part of their lupus. When lupus involves the central nervous system many such manifestations could be present. It may be hard to determine if the depression is related to living with the constitutional symptoms of a debilitating illness or if it is part of the disease process itself.
It’s reportedly difficult to obtain the correct diagnosis? Why is that?
Many symptoms can be not specific so intensive diagnostic efforts may not begin until symptoms seem to persist. Also, there may be reasons when a diagnosis seems likely but not positive to be circumspect. That said, we need to make sure primary care doctors know about multiple autoimmune diseases and make referrals to appropriate specialists. It can take some time for the disease to declare itself and following the patient for a longer period of time may be necessary.