Lupus: Hard to Diagnose, Disproportionately Affects Black Women, but Fairly Little Known in the Community

Lupus is a disease that affects people of all races and ethnic groups. The Lupus Foundation of America estimates that 1.5 million Americans have some form of lupus. Of those that are living with lupus, 90% of them are women. Furthermore, lupus is three times more prevalent in Black women than Caucasian women; 1 in 250 Black women will develop lupus.

Even though lupus is a disease that disproportionately affects Black women and other people of color, most people know little to nothing about it. A 2012 Lupus Awareness Survey found that 61% of Americans said they knew little or nothing about the disease; specifically, 57% of Black people said they had never heard of lupus or knew little about it.

So, what is lupus?

Lupus is a chronic autoimmune disease affecting any part of the body. The condition makes the immune system unable to tell the difference between healthy tissue and foreign bacteria, germs, and viruses, causing the immune system to attack healthy tissue and cause inflammation. The cause of lupus is unknown, but dozens of known genetic variants impact who gets lupus and how severe it is. Lupus is hereditary/genetic and is not contagious.

There are four different types of lupus:

  • Systemic Lupus (SLE) is the most prevalent form of lupus, accounting for more than 70% of all cases. It can affect all body parts, including skin, joints, heart, lungs, kidneys, liver, brain, or blood.
  • Drug-Induced Lupus is caused by taking certain types of medicines, and it typically goes away when the patient stops taking the medication. Symptoms can be similar to systemic lupus.
  • Cutaneous (Discoid) Lupus affects only the skin, typically in the form of rashes. It accounts for about 10% of all lupus cases.
  • Neonatal Lupus is a rare condition where the mother’s antibodies affect the fetus. It can cause the baby to experience symptoms that range from a rash that goes away to a permanent heart defect.

Since lupus can affect any part of the body and impacts everyone differently, there are many symptoms. The most common symptoms are facial “butterfly” rashes, sores in the nose or mouth, joint pain and swelling, fatigue, feverish feeling, unusual hair loss, memory problems, and blood complications.

Lupus can be difficult to diagnose because its varying symptoms are similar to many other illnesses, and lupus symptoms can be unclear, come and go, or change. Because of the difficulty of diagnosis, on average, it takes about six years from the time people first notice their symptoms to being correctly diagnosed with lupus. Sixty-three percent of people with lupus reported being incorrectly diagnosed, and 55% reported seeing four or more different healthcare providers before being accurately diagnosed.
To diagnose lupus, doctors use a list of eleven criteria, symptoms, and laboratory test results, to help determine whether a patient has lupus. A patient must have at least four criteria to be diagnosed. They do not have to have all four criteria simultaneously but must let their doctor know about any previous tests or symptoms.

If you have been diagnosed with lupus, there are various resources to help you financially and medically, for the disease can be costly. The average annual direct healthcare cost of a person with lupus is $33,223. Visit to find programs and services for local and national support.