Living with Lupus, an “Invisible Illness”

Sponsored by Merck

Some people call lupus an “invisible illness” because many of its symptoms cannot be seen by others. Javon understands how challenging this can be. When she was in college, she faced various health problems, including hair loss, chronic fatigue, joint pain, and persistent ulcers in her nose, mouth, and throat. Her symptoms led her to urgent care clinics, emergency rooms, and ultimately, her primary care doctor, as she was determined to figure out the mystery of her symptoms.

It wasn’t until two years after Javon’s college graduation that she finally received a lupus diagnosis. This diagnosis allowed her to begin treatment for the condition.

The impact of lupus

Lupus is a chronic (long-lasting or ongoing) autoimmune disorder that can affect many body organs, including a patient’s joints, eyes, and skin. Lupus can cause pain, swelling, extreme fatigue, and physical impairment.^1,2 People with lupus may have periods when their symptoms worsen. There may also be times when their symptoms improve or completely disappear (also called “remission”).

Javon often experiences pain, swelling, inflammation, and fever. Her symptoms can be affected by different triggers – primarily stress and weather – that she must take into consideration as she manages her life and condition.

“Every day can be different and having lupus can be really isolating,” explains Javon. It’s difficult to navigate a disease that others can’t see.”

Lupus is more common within the Black/African American community

People of all races and ethnic backgrounds can develop lupus. However, lupus disproportionately impacts certain communities; of note, lupus is two to three times more prevalent among African American women and other women of color, than among White women.²

Because symptoms can be complex and unpredictable, lupus remains widely underdiagnosed.³Similar to Javon, some individuals report experiencing delays in diagnosis, misdiagnoses, or challenges in receiving appropriate care.³

Advancing research in autoimmune diseases

Lupus is one of the most complex autoimmune diseases.⁴ No two cases of lupus are the same, and because lupus is difficult to diagnose, people with lupus will often have to work with their doctor to find different ways to manage their symptoms.⁵

Researchers are working to better understand how autoimmune diseases can cause the body’s immune system to become “out of balance,” which can lead white blood cells to attack healthy cells. They are committed to making new discoveries and exploring investigational medicines, to help people diagnosed with autoimmune diseases safely and effectively manage their conditions.

To learn more about Merck’s research in autoimmune diseases, click here: https://www.merck.com/research/immunology/.