Pregnancy comes along with a host of emotions, and it also takes a toll on the body. For Black women — many of whom are understandably focused on increasing their odds of a safe, healthy pregnancy — having an autoimmune disease can add on even more emotional and physical stressors.
Lupus is an example of an autoimmune disease that disproportionately affects Black women and can affect pregnancy in many ways. But there are also several other autoimmune diseases pregnant Black women should be aware of.
Pregnant people with autoimmune diseases can have healthy pregnancies. But it’s important to understand what the potential risks and complications are so that you can work closely with your doctor and care team to increase your odds of a healthy pregnancy. After all, knowledge is power.
What is an autoimmune disease?
Your immune system helps protect your body from foreign objects — like germs, for example. In this way, your immune system helps you prevent or fight off infections.
When someone has an autoimmune disease, it means that the body mistakenly thinks that some part of itself is the foreign object, and the body attacks itself. This causes the primary symptoms of autoimmune disease: inflammation, or swelling and/or redness, and pain.
How can autoimmune diseases complicate pregnancy?
In general, autoimmune diseases affect women more than men, possibly due to the many hormonal changes women experience over their lives.1 These changes happen during puberty, reproductive age across the menstrual cycle, menopause, and of course, pregnancy.
Autoimmune diseases can cause pregnancy complications because of their potential effects on the pregnant person and on the fetus or baby. Some medications the pregnant person is taking to manage their autoimmune condition might be unsafe during pregnancy, which means the person might have to switch to different medications — that may or may not treat their condition as well — or otherwise risk negatively affecting the fetus or baby.
Which autoimmune diseases complicate pregnancy?
What it is: Lupus is an autoimmune disease that usually affects the skin, joints, kidneys, and heart. There are four types of lupus: neonatal lupus, drug-induced lupus, cutaneous lupus (limited to the skin), and systemic lupus erythematosus (SLE). SLE is the most common form of lupus.2
Risk to pregnant Black women: Black women are the most likely to develop SLE of any other race or gender. Additionally, they have the worst outcomes when it comes to SLE progressing and getting worse over time.3
Potential pregnancy complications: The CDC recommends that women with SLE ensure their condition is controlled for at least 6 months before getting pregnant.4 Women with lupus can have healthy pregnancies, but their pregnancies are always considered high-risk. Having high blood pressure, kidney problems, blood clotting issues can further increase the risk of pregnancy complications for women with lupus.5
Lupus can increase the risk of premature birth, miscarriage, stillbirth, or having a baby with neonatal lupus. But not all babies born to a mother with SLE will develop neonatal lupus, and even those who do often grow out of it.
About 2 in 10 pregnant women with lupus develop preeclampsia, or high blood pressure during or soon after pregnancy.4 Preeclampsia is an emergency and may require early delivery of the baby if the mother is still pregnant.
What it is: Antiphospholipid syndrome happens when antibodies — which are supposed to attack foreign objects — attack tissues in the body instead. This causes blood clots to form in different parts of the body, including the legs, lungs, and kidneys.6
Risk to pregnant Black women: Antiphospholipid syndrome is one of the four most severe complications of SLE and therefore is of important concern for Black women.
Potential pregnancy complications: Antiphospholipid syndrome can increase the risk of miscarriage or stillbirth, can cause high blood pressure — including preeclampsia — and can stunt the growth of the fetus.7
What it is: Rheumatoid arthritis (RA) happens when antibodies attack the joints. People with RA may have flare ups where symptoms are worse for a period of time.
Risk to pregnant Black women: Unfortunately, there isn’t much data that shows exactly how many Black people have RA. Based on what we do know, Black patients with RA are least likely of all racial groups to receive the drugs of choice for RA treatment, disease-modifying anti-rheumatic drugs (DMARDs), to manage their disease.8
Potential pregnancy complications: RA is an autoimmune condition that may actually improve during pregnancy. However, pregnant people can develop new RA during pregnancy or just after delivery. One study showed that RA improved in 60% of patients with RA during pregnancy. During the postpartum period, RA flared in about 46% of those patients.9
According to the Arthritis Foundation, the biggest risk of complications — like preterm birth and having a baby that’s small for its gestational age — happens with women whose RA is not controlled.9 Women with RA may also have more trouble getting pregnant if their RA is not controlled.10
What it is: Scleroderma — which literally means “hard skin” — is an autoimmune disease that affects connective tissue and the joints in the body.11 Scleroderma causes inflammation and prompts the body to make more collagen than it needs, which creates hard, tight skin.
Risk to pregnant Black women: About 60% of people with scleroderma are women, and of those, most are Black or Hispanic.12 Black people are more likely to develop scleroderma at younger ages, and when they do get it, they’re more likely to have skin-related symptoms and lung disease.13
Potential pregnancy complications: The Arthritis Foundation recommends “waiting at least three years after your scleroderma diagnosis to become pregnant,” mainly because the disease can be highly unpredictable during that initial time range. If the disease is stable, then it’s likely to remain stable throughout a pregnancy.14
Up to 10% of women with scleroderma have two specific antibodies called anti-Ro and anti-La. Women with these antibodies have a low risk of having a baby with a congenital heart block or abnormal heart rhythm. Women with scleroderma are more likely to have placental insufficiency, meaning that the fetus or baby doesn’t get the full blood supply they should and is more likely to have a low birth weight.14
What it is: Sjogren’s is an autoimmune disease that affects the entire body, especially the muscles and joints. The two most common problems are dry eyes and dry mouth, but many more problems can occur, including internal organ issues, nerve problems, and blood cancers.15
Risk to pregnant Black women: Black people with Sjogren’s syndrome are more likely to be diagnosed at earlier ages — seven years earlier, by some estimates — than white individuals are.16
Potential pregnancy complications: It’s important to know that most women with Sjogren’s will have healthy babies, but complications can come along with pregnancy and the disease. Sjogren’s is one of the autoimmune conditions that typically gets worse during pregnancy and the postpartum period.17
In addition to pregnancy complications for the pregnant person, Sjogren’s can also create risk for the fetus or baby. Two of the main potential outcomes include neonatal lupus and congenital heart block, which can be severe.17 These are most likely to occur in the babies of women who have specific antibodies called SSA or SSB antibodies, the major antibodies in Sjogren’s syndrome.18
What it is: Immune thrombocytopenia purpura (ITP) is an autoimmune disease that affects cells in your blood — specifically, platelets.7 Platelets help your blood clot so that you don’t bleed continuously if you have a cut or wound. But people with ITP have fewer platelets, so their blood doesn’t clot easily.
Risk to pregnant Black women: Thrombocytopenia happens four times more often in pregnant women than in non-pregnant women. It’s also a condition that can develop as a result of SLE. When that happens, it’s known as secondary ITP.19 Black and Hispanic patients have the highest incidence of secondary ITP as a result of SLE.20
Potential pregnancy complications: ITP can cause pregnant people and their babies to bleed too much. There’s an increased risk of spontaneous bleeding, placental abruption (when the placenta separates from the uterus), and life-threatening postpartum hemorrhage, in addition to stillbirth, fetal loss, and premature delivery.19,21
What it is: In general, myasthenia gravis (MG) is an autoimmune disease that causes weakness in your skeletal muscles — the muscles you intentionally use to do things like move your arms or walk. This muscle weakness gets worse during activity and gets better after rest.22 MG most often affects women in their 20s and 30s.23
Risk to pregnant Black women: Black patients are more likely to develop MG earlier than whites are. And their disease also tends to be more severe.24
Potential pregnancy complications: Whether or not MG will negatively affect someone during pregnancy varies from one case to the next. Some women report no change in their condition, while others report improvement, and still others report worse symptoms.23
In most cases MG doesn’t affect the pregnancy itself,23 but the antibodies that cause this condition do cross the placenta from mother to fetus. So there’s a 1 in 5 chance that a baby whose mother has MG will be born with the condition too. The good news is that once the mother’s antibodies disappear, the effects of MG on the baby should also disappear.7
So, what can I do if I have, or a loved one has, an autoimmune disease and become pregnant?
If you have an autoimmune disease and become pregnant, you should stay closely connected to your care team – which may include an OB/GYN (or a high-risk pregnancy doctor), a rheumatologist, and a pediatrician.
If you’re not pregnant yet, but plan to be, you’ll want to let your care team know so that they can help develop a care plan that helps you control your disease with medications that would be safe for you and a future pregnancy.
Here are 3 questions you can consider asking:
- Could my condition or the medications I take for it affect my ability to get pregnant?
- Can any of the medications I take negatively affect a pregnancy/fetus/baby?
- Could my condition get worse or get better during pregnancy?
- Do you know anyone who has been diagnosed with lupus?
- Which of these conditions were you most surprised to learn more about?
- Sohn, E. Why autoimmunity is most common in women. Nature, 2021;595,S51-S53. doi: https://doi.org/10.1038/d41586-021-01836-9
- Centers for Disease Control and Prevention. Systemic Lupus Erythematosus (SLE). https://www.cdc.gov/lupus/facts/detailed.html#sle
- Chae, D. H., Martz, C. D., Fuller-Rowell, T. E., et al. Racial Discrimination, Disease Activity, and Organ Damage: The Black Women’s Experiences Living With Lupus (BeWELL) Study. American journal of epidemiology, 188(8), 1434–1443. https://doi.org/10.1093/aje/kwz105
- Centers for Disease Control and Prevention. Pregnancy and Lupus. https://www.cdc.gov/lupus/basics/pregnancy
- Lupus Foundation of America. Lupus and Pregnancy. https://www.lupus.org/resources/planning-a-pregnancy-when-you-have-lupus
- Mayo Clinic. Antiphospholipid syndrome. https://www.mayoclinic.org/diseases-conditions/antiphospholipid-syndrome/
- Merck Manual. Autoimmune Disorders During Pregnancy. https://www.merckmanuals.com/home/women-s-health-issues/pregnancy-complicated-by-disease/autoimmune-disorders-during-pregnancy
- Yip, K., & Navarro-Millán, I. (2021). Racial, ethnic, and healthcare disparities in rheumatoid arthritis. Current opinion in rheumatology, 33(2), 117–121. https://doi.org/10.1097/BOR.0000000000000782
- Arthritis Foundation. Rheumatoid Arthritis and Pregnancy. https://www.arthritis.org/health-wellness/healthy-living/family-relationships/family-planning/rheumatoid-arthritis-and-pregnancy
- Arthritis Foundation. About Arthritis. https://www.arthritis.org/
- University of Michigan Health. What is Scleroderma. https://www.uofmhealth.org/conditions-treatments/rheumatology/what-scleroderma
- Medical University of South Carolina. Researchers Take a Multifaceted Approach to Understanding Autoimmune Disease Disparities. https://medicine.musc.edu/departments/dom/news-and-awards/2022/may-2022/understanding-autoimmune-disease-disparities
- National Institute of Arthritis and Musculoskeletal and Skin Diseases. Scleroderma. https://www.niams.nih.gov/health-topics/scleroderma
- Arthritis Foundation. Scleroderma and Pregnancy. https://www.arthritis.org/health-wellness/healthy-living/family-relationships/family-planning/scleroderma-and-pregnancy
- American College of Rheumatology. Sjogren’s Syndrome. https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Sjogrens-Syndrome
- The Rheumatologist. Location & ethnicity affect manifestations of primary Sjogren’s syndrome. https://www.the-rheumatologist.org/article/location-ethnicity-affect-manifestations-primary-sjogrens-syndrome/
- Gupta, S., & Gupta, N. (2017). Sjögren Syndrome and Pregnancy: A Literature Review. The Permanente journal, 21, 16–047. https://doi.org/10.7812/TPP/16-047
- Sjogren’s Foundation. Pregnancy and Sjogren’s. https://www.sjogrens.org/living-with-sjogrens/pregnancy-and-sjogrens
- Huang, Q. S., Zhu, X. L., Qu, Q. Y., et al. Prediction of postpartum hemorrhage in pregnant women with immune thrombocytopenia: Development and validation of the MONITOR model in a nationwide multicenter study. American journal of hematology, 96(5), 561–570. https://doi.org/10.1002/ajh.26134
- Kim, T. O., Grimes, A. B., Kirk, S. E., et al. Racial variation in ITP prevalence and chronic disease phenotype suggests biological differences. Blood, 136(5), 640–643. https://doi.org/10.1182/blood.2020004888
- Wyszynski, D. F., Carman, W. J., Cantor, A. B., et al. (2016). Pregnancy and Birth Outcomes among Women with Idiopathic Thrombocytopenic Purpura. Journal of pregnancy, 2016, 8297407. https://doi.org/10.1155/2016/8297407
- National Institute of Neurological Disorders and Stroke. Myasthenia Gravis Fact Sheet. https://www.ninds.nih.gov/myasthenia-gravis-fact-sheet
- Bansal, R., Goyal, M. K., & Modi, M. Management of myasthenia gravis during pregnancy. Indian journal of pharmacology, 50(6), 302–308. https://doi.org/10.4103/ijp.IJP_452_17
- Myasthenia Gravis. The impact of ethnicity in myasthenia gravis. https://myasthenia-gravis.com/living/ethnicity-impact