Many diseases are commonly misdiagnosed, including cancers, infections, heart conditions, and neurological issues. One of the most confusing and misdiagnosed diseases is lupus. It’s often misdiagnosed because of how it affects the body is very similar to other diseases.
Lupus is an autoimmune disease that attacks the healthy tissues inside of your body. Unlike HIV (human immunodeficiency virus) where the immune system is underactive, lupus causes your immune system to be overactive.
When your immune system is working at the optimal level it produces antibodies that fight off germs, viruses and bacteria (foreign invaders). In autoimmune diseases such as lupus, your body is unable to detect these foreign invaders, and it creates autoantibodies that destroy your healthy tissue.
Lupus can affect any part of the body (organs, skin, joints, muscles, etc). People that suffer from lupus often experience pain, inflammation, and damage in various parts of their body. The flare-up nature of lupus leaves many feeling better for stretches and worse during periods of time as well.
This disease disproportionately affects women more than men. A University of Michigan study revealed that Black women are three times more likely to develop lupus than any other race.
This disease often affects women during the childbearing ages 15-44, but the onset for Black women can occur earlier according to studies. Erica Mangham, Western Region Development Director, of the Lupus Research Alliance (formerly named Alliance for Lupus Research), attests to this.
There has been some progress but we still have a long way to go to capture that data. We do know that out of the 1.5 million Americans diagnose 90% of those are women and African Americans are 3 times more likely to be diagnosed with lupus.
Despite the shocking statistics, this disease is still relatively misunderstood and hard to diagnose amongst medical professionals. BlackDoctor.org has reported that lupus is one of the top diseases misdiagnosed in Blacks, with over half of Black women who suffer from the disease being misdiagnosed with something else after seeing the doctor several times.
Black women like Kimberly Dansby tell a stark tale of misdiagnosis. She was misdiagnosed for six years before getting a correct diagnosis. Her story in EBONY sheds light on what it’s like living with lupus while Black and female.
BlackDoctor.org wants our people to be ahead of the pack, so I’ve compiled a list of seven ways to detect this misdiagnosed disease.
The Lupus Foundation of America says that more than half of the people who develop lupus, experience joint pain as their first symptom. It’s estimated that over 90 percent of the people with lupus will experience myalgia (muscle aches and pain) or joint pain at some point during their illness.
These flare-ups of pain cause muscle tenderness, weakness, and loss of strength. No lupus is alike, so it’s important to speak with a rheumatologist( physicians who specialize in muscles, bones, and joints) about your symptoms.
Although inflammation is the most common reasons for these muscle aches and pains, still see your doctor to get an accurate perspective on your specific condition. Oftentimes inflammations in various parts of the body are accompanied by fevers, sweats, chills, fatigue, weight loss, and muscle weakness.
READ: Shey Webb: A Lupus Fitness Warrior
It’s very common for people with lupus to experience some form of skin disease. In fact, two-thirds will develop a skin disease called cutaneous lupus erythematosus. Rashes and sores often appear in areas where your skin will be vulnerable to the sun (legs, neck, ears, face, and arms).
According to the Lupus Foundation, 40-70 percent of lupus sufferers say that their disease is agitated by exposure to UV rays from the sunlight or artificial light. Lupus skin disease occurs in three forms: chronic cutaneous (discoid) lupus, subacute cutaneous lupus, and acute cutaneous lupus.
Discoid lupus symptoms are marked by disk-shaped, round lesions that usually appear on the face or scalp, but sometimes can appear on other parts of the body. These lesions don’t hurt or itch, but if they appear on the scalp it might cause hair loss.
Subacute cutaneous lupus symptoms are red scaly lesions with distinct red ring shape or edge. These also occur in unexposed areas of the body (arms, neck, body, and shoulders). They don’t itch, but they can become discolored.
Acute cutaneous lupus most commonly occurs as a rash on the face. The rash on the face will be red and closely resemble a sunburn. If the rash appears on both cheeks and across the bridge of the nose it’s commonly referred to as the “butterfly rash”. This rash can appear on other parts of the body and is also sensitive to light.
The National Kidney Foundation says that lupus comes in two forms: Systemic lupus erythematosus (SLE) and “discoid” lupus erythematosus. Systemic lupus erythematosus has an effect on various parts of the body including the skin, brain, joints, and kidneys, while discoid lupus only affects the skin.
SLE’s effect on the kidneys is called lupus nephritis. Lupus nephritis damages the kidneys by inflaming the small blood vessels that filter waste in the kidneys and attacking them as if they were foreign invaders.
Some symptoms of lupus nephritis are blood in the urine (hematuria), protein in the urine (proteinuria), edema (swelling), weight gain and high blood pressure.
Heart disease is the number one cause of death for people with lupus according to the Lupus Foundation of America. Lupus causes inflammation in the pericardium (the sac around your heart). Pericarditis symptoms include sharp pains in the chest and shortness of breath.
Chronic inflammation of the pericardium can interfere with the heart’s ability to pump blood to the rest of the body.
Fatigue is a common symptom for many people with lupus. Anemia, kidney failure and hypothyroidism caused by lupus are the major things doctors look for when examining a patient’s fatigue, but they aren’t always the cause.
Although there’s no exact reason why fatigue occurs specifically, a variety of factors play a role. Many experts say that pain, age, medication, poor physical and mental health, activity of the disease itself and lack of social support are key determinants of this disease.
Hair loss is a common side effect of lupus. The disease itself causes damage to the hair follicles, but the medication that goes along with treating the disease also cause it. Hair loss stemming from medication is mostly reversible according to the Lupus Foundation of America, but hair loss from discoid lesions is mostly permanent.
Systemic lupus erythematosus causes mouth sores in 40-50% of lupus patients according to Mollys Fund. These mouth sores aren’t life-threatening, but they can be painful in some cases. You generally see these sores on the roof of the mouth, but can also appear on the gums, inside of the cheeks, and the lips.
There’s a lot to be uncovered about this rampant but still relatively unknown disease. Organizations like the Lupus Research Alliance are doing some awesome work all over the country to help raise money for this disease.
“Since 1999 we have given over $106 million dollars toward research,” Mangham tells BlackDoctor.org.
She adds, “100 percent of all donations raised goes directly back to research. This is huge in the nonprofit and research world. Our mission is to find better treatments and ultimately cure lupus. We are world’s largest private funder of lupus research.”
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