Did you know that 90% of people with lupus are women? Or that most of these women are diagnosed with lupus between 15 and 45 years old?
Did you know that like Black Breast Cancer, Black Lupus is a different disease?
It’s true. The statistics around Black women and lupus mirror the all too familiar and troubling statistics on Black Breast Cancer:
1 in every 250 Black women will develop lupus (Lupus.org); Black women are three times more likely to get lupus than white women (CDC); The mortality rate for Black women with lupus is 3 times higher than white women with lupus (Lupus Foundation of America); Black women get lupus younger and with worse symptoms (CDC); Black women with lupus also have increased rates of neurological problems such as seizures, hemorrhages, and strokes (LFA).
TOUCH, The Black Breast Cancer Alliance sat down with Dr. Monique Gary and three Black breasties—Yvonne McLean Florence, Lisa B. Jones, and Shalena Brown—to find out what Black breast cancer patients need to know about lupus.
What is lupus?
Lupus is a chronic autoimmune disease in which your immune system can’t tell the difference between your own healthy body and dangerous germs or infections, so it attacks healthy tissues and organs by mistake. As a result of this immune attack, lupus causes inflammation and pain all over the body.
There are four different types of lupus: 1) Systemic Lupus Erythematosus (SLE), the most common and the most serious that is not localized or specific to one area of the body 2) Cutaneous lupus erythematosus, which affects the skin 3) Drug-induced lupus, a shorter-term subtype induced by medications and 4) Neonatal lupus, a rare subtype that affects newborns.
Because there are so many different types of lupus, the disease can manifest in unique and changing ways for each patient. Considered a ‘diagnosis of exclusion,’ lupus can be an incredibly difficult diagnosis to pin down. The ‘exclusion’ means that patients often only receive a lupus diagnosis after a long, tedious process of elimination, during which any other possible conditions are ruled out one by one. While Shalena was diagnosed with lupus in under a year, it took years and years of experiencing lupus symptoms for Yvonne and Lisa to finally be diagnosed.
What does lupus feel like?
A Lupus Foundation of America survey found that 65% of lupus patients listed chronic pain as the most difficult aspect of lupus. Because lupus isn’t localized to one body part, the pain associated with it is more generalized as well. As such, all three women have found that doctors are likely to dismiss or brush off their pain symptoms. And as Black women, a group significantly more likely to have their pain undertreated, they have to fight for doctors to take their pain seriously.