Many people may recognize the term “lupus” and think of it as an autoimmune disease that can cause joint pain and swelling, but you may not be aware lupus impacts an estimated 1.5 million Americans and can affect many parts of the body.
Who is at Risk?
The disease that causes the immune system to attack its own tissues mainly impacts women, who make up 9 out of 10 lupus patients. Genetics also play a role in lupus. If you have a family member with lupus or another autoimmune disease, you are at greater risk.
Some racial and ethnic groups are also at elevated risk, including those of Black, Asian American, Hispanic/Latino, Native American and Pacific Islander heritage. Additionally, Black, Hispanic/Latino and Asian American lupus patients are more likely to develop complications, including kidney damage (also known as lupus nephritis), and these patients tend to have worse outcomes than white patients.
What is Lupus Nephritis?
Lupus nephritis – kidney swelling and irritation caused by lupus – affects up to 60% of patients with lupus, according to the American Kidney Fund. It can cause permanent kidney damage, called chronic kidney disease, which can affect your quality of life. People with lupus nephritis also have a higher chance of heart problems, blood vessel problems and developing certain types of cancer.
Symptoms of lupus nephritis include weight gain, fatigue, joint pain or swelling, muscle pain, fever, high blood pressure and frequent urination. Because some of the symptoms of lupus nephritis can also look like symptoms of other diseases, it’s important for lupus patients to talk to their doctors about testing their kidney function regularly. Testing your kidney function involves a urine test to look for protein and a blood test to check for waste products in your blood.
What Happens After A Diagnosis?
If you are diagnosed with lupus nephritis, it is important you see a kidney doctor, called a nephrologist. Treatment for lupus nephritis focuses on preventing additional kidney damage. It’s also important to recognize lupus nephritis can impact your mental health too. These tips from the American Kidney Fund can help you navigate your care and cope with lupus nephritis:
- Ensure your kidney function is tested regularly and you are referred to a nephrologist.
- Keep records of your symptoms, tests and test results so you can share them with your doctors in detail.
- Consider medication to lower your blood pressure, if directed by your health care provider, which can help lower the amount of protein in your urine.
- Write down questions you have for your doctor and bring them to your next visit.
- Take notes on what your doctor says during your visits.
- Find healthy ways to cope, such as meditating, journaling or exercising.
- Take a diuretic, or water pill, if directed by your health care provider, to help rid your body of extra fluid, which can raise your blood pressure and cause strain on your heart.
- Talk to a professional, such as a mental health therapist, counselor or social worker, to help understand and process emotions, improve coping skills and advocate for your needs.
- Join a support group to connect with others who have similar experiences.
- Ask your doctor for handouts or suggestions for where you can go for more information.
- Don’t be afraid to get a second opinion if you feel your doctor is not taking your concerns seriously.
To learn more and find resources to help cope with lupus nephritis, visit KidneyFund.org/lupus.
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