Living your best life with lupus

Certain communities have a higher chance of getting lupus, which happens when your body’s defense system (like your own army of protection) gets confused and starts fighting against itself instead of fighting germs. This can make different parts of your body feel sick.

There are different types of lupus and the ones below impact certain communities more.

Systemic Lupus Erythematosus (SLE)

SLE is the main type of lupus. “Systemic” means it can affect your whole body. SLE can cause problems in different body parts like skin, joints, heart, lungs, brain, kidneys, and blood.

Lupus Nephritis (LN)

LN is when lupus attacks your kidneys. About 40-60% of people with SLE eventually get LN. Lupus patients of color tend to get LN more often than white Americans. The good news is that early treatment helps protect your kidneys.

Discoid Lupus (DLE)

DLE is a type of skin lupus that causes round, disc-shaped patches on the face, scalp, ears, neck, or arms.

When we share our health care journey, we can inspire others to take action, which may improve their healthcare outcomes.

Learn from experts

Patient & Expert Events "Living Your Best Life with Lupus"

Dr. Carolina Otero

Rheumatologist

Dr. Rodney Daniel

Rheumatologist

Dr. Christopher Mesa

Reumatólogo

Este evento educativo en vivo se presentará en español.

Patient stories

Hear real patients stories from patients like you.

“I have had a long journey with lupus (SLE ) and lupus nephritis (LN), kidney failure, and getting a kidney transplant. I was ashamed for many years, and this delayed me getting treated and taking care of myself. You can learn from my journey… Know that you are not alone. There is a community here for you.”

—Alison, Lupus advocate

“I felt as a Latina woman, I was not taken seriously. Before receiving a lupus diagnosis, I was told several times that I was fine, and was diagnosed with anxiety disorder. It is crucial to speak up and advocate for yourself.”

—Juana, Lupus advocate

“As Black women, we must empower and advocate for ourselves. When I was experiencing symptoms of lupus (SLE), I was not heard… But I finally found a care team that understands me. Don’t be afraid to seek a second opinion.”

—Tanya, Lupus advocate

Interested in sharing your story? If you participate, you will be paid for your time.

African American Community

Black/African American women are 4 times more likely to get lupus than white women and often get it at a younger age – usually between ages 15 and 45.
Your genes (traits you get from your family) can make you more likely to get lupus. About 1 in 4 African Americans have genes that can lead to worse lupus symptoms.
Also, Black/African Americans often get more severe health problems from lupus, like heart issues or breathing problems. But here’s the good news: if doctors find and treat lupus early, most people can live healthy, active lives.

Unfortunately, getting good care for lupus can be more challenging for our Community.

Only 60% of Black/African Americans get to see one within three months of having symptoms.
More than 50% of us with lupus must use emergency rooms for care because they can’t get to a specialist.
Studies show that out of every 100 people who could get newer, better lupus medicines, 30 fewer African Americans get these treatments compared to white patients.
Even going to the doctor is harder – studies show that Black/African Americans travel 2 times farther to get to lupus specialists than white patients.

Finding a rheumatologist or a nephrologist specializing in Lupus treatment is an important step. If you notice any signs of lupus, write them down and talk to your doctor right away.

Patient navigators can help. Studies show that Patient Navigators have made it 60% easier for African Americans to stick to their treatment plans.

You can also join support groups to meet others who want to help people like you.

Remember: your health matters, your symptoms are real, and you can get better with the right care. You’re not alone – reach out for help today.

Asian Americans & Pacific Islanders

Asians and Pacific Islanders are the second group most likely to get lupus, after African Americans.

Our family genes (things we inherit from our parents) make a difference. Asians have special genes that make it more likely for us to get lupus.
Some Asians, such as Filipinos or Chinese, might get lupus at a younger age.
Asian lupus patients are at higher risk of getting kidney problems compared to white lupus patients. 40% of Asians with lupus will get kidney problems, which often show up in the first 2-3 years.

Getting help for lupus can be hard for our community. It usually takes Asian Americans almost 2 years to find out they have lupus.

Lupus is a challenging condition to diagnose. Some Asian Americans (or parents of Lupus patients) may have trouble with English – 1 out of every 3 Asian Americans finds it hard to speak English well.
Many of us also try traditional Asian medicine first – about 6 out of 10 Asian Americans use these treatments before seeing a regular doctor. This can make lupus worse because you’re waiting too long to get the right help.

But there’s good news! When Asian Americans get into the proper care, they’re 50% more likely to take their medicine the right way.

Patient navigators who understand Asian customs – have helped 70% Asian patients take better care of their lupus. You can also join support groups with others who have lupus.

Remember: your health problems are real, and your health matters. If you find the right doctors and treat lupus early, most people can stay healthy and protect their kidneys.

Hispanic American Community

We get lupus 2-3 times more often than white Americans. Also, many of us get it when we’re around 30- younger than many other groups.

Many Hispanic Americans, especially those whose families come from Native American backgrounds, have special genes (things we get from our parents and grandparents) that make us more likely to get lupus.
If you’re Mexican American or Puerto Rican, you might get worse lupus symptoms than others.
About 3 out of every 10 Hispanics with lupus will get kidney problems within 5 years.

Getting help for lupus can be hard for our community. Did you know Hispanic Americans usually have to wait 2 years longer than white patients to find out they have lupus?

1 out of every 3 Hispanics may have trouble talking to doctors in English. Many of us don’t go to the doctor yearly for checkups, where the early signs of lupus can be caught.
There’s good news: many health institutions now have doctors and nurses who are Lupus specialists and speak Spanish.
Patient navigators can help lupus patients. Studies show that 65% (about 6 out of 10) do better with their lupus treatment.

But here’s the good news: we can live normal, healthy lives when we find and treat lupus early!

If you have symptoms, write down how you feel and see a doctor right away. Many clinics now have special programs tailored for Hispanic patients. They have Spanish-speaking staff and offer discounted payment plans to help you pay for care.

You can also join groups with other lupus patients. They know what you’re going through and may understand your culture too.

Remember: your health problems are real, and you can handle lupus with the right help. Don’t let fear or insurance problems stop you – be an advocate for yourself!

Interested in sharing your story?

We want to hear from you. We must raise our voices to ensure that stories from our underrepresented patient communities are heard. If you are selected, you will be paid for your time.

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