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Tuesday, May 10, 2016

Living With Lupus... As A Mother

We may run, walk, stumble, drive, or fly, but let us never lose sight of the reason for the journey, or miss a chance to see a rainbow on the way. -- Gloria Gaither

Pregnancy and motherhood come with their own set of challenges. From impossible fatigue to seemingly endless aches and pains, new mothers experience a wide array of symptoms that can make the whole mom thing less than fun. However, when those common symptoms are exacerbated by the pain, inflammation, irritation, respiratory distress, and suceptible immunity of lupus, there are many other factors to consider, for mothers, her child, and her circle of support.

What Is Lupus? 
Lupus is a chronic autoimmune disorder, wherein damaged cells of the immune system attack healthy cells of multiple systems, leading to inflammation, joint pain, and skin rashes, in addition to kidney, heart, lung, nerve, and liver damage, in severe cases. Digestive issues and anemia are also areas of concern. All over, and usually, symmetrical joint pain is often the first sign. There may also be a common "butterfly" rash across the face, along with other skin irritations, sensitivities to the sun, and mouth ulcers. In fact, the entire integumentary system may be affected in the form of scaly skin, brittle nails, and patchy hair loss. Another symptom is unrelenting and debilitating fatigue, often with a low-grade fever. Lupus shares many symptoms with rheumatoid arthritis, fibromyalgia, Sj√∂gren's syndrome, and other autoimmune conditions. A battery of lab tests and history help to diagnose lupus. Women are 10 times more likely to get lupus than men, and women who are African-American, between the ages of 20-40, and related to someone with lupus, are more more likely to get the he incurable condition, than other groups. The symptoms of lupus come and go, present themselves one at a time, altogether, or in any combination, and can be treated by addressing its multiple symptoms with corticosteroid pills or cremes, NSAIDs, and antimalarial medications. People living with lupus are at an increased risk of developing heart disease and having a stroke. 


Lupus and Fertility 
Lupus alone does not create issues with fertility. During the preconception period, a woman with lupus should meet with a rheumatologist, perinatologist, and a pediatric cardiologist, in order to discuss risks and options for both mother and child, including finding a hospital that specializes in specialized infant care. Hopeful mothers should adopt and maintain a healthy lifestyle in order to minimize lupus-related symptoms. Women who conceive while symptoms are in remission are less likely to have complications during pregnancy. While fewer than 50% of lupus pregnancies have complications, all pregnant women with lupus are considered high risk. Planning pregnancies while living with lupus is important.


Lupus and Pregnancy
The pregnancy complications associated with lupus include an increased risk of miscarriage, still birth, prematurity, preeclampsia, and HELLP syndrome.  In order to monitor and decrease these risks, more frequent doctors' visits are necessary and eventual bedrest is likely. All pregnancies are different. Some will require treatment early on to adjust medication levels, while others require frequent monitoring after the first trimester, in order to check for blood clots, blood pressure, fetal growth, and offer reassurance, often via ultrasound. The physiological demands of pregnancy can often place extra stress on the mother's heart, liver, and kidneys. Expectant mothers and their partners should be extra vigilant about lupus flares. Although they are rare during pregnancy, they often appear as exaggerated signs of pregnancy, including fatigue, joint swelling, fluid accumulation, skin changes, and hair changes. Just as in a normal pregnancy, nutrition, weight management, and rest are essential for an optimal birth outcome.

Neonatal Lupus
Most babies born to women with lupus are born healthy, when full-term. Those that are born prematurely, are at risk for the same heart, lung, digestion, and growth complications as other preemies. In very rare cases, the newborn can have neonatal lupus, which may mimic mom's symptoms of skin rashes, anemia, or liver problems. These symptoms usually go away after a few months and do not cause permanent damage. If a newborn presents with a heart condition related to neonatal lupus, the prognosis is more concerning. 


Breastfeeding and Postpartum 
Lupus itself does not prevent breastfeeding and since lupus is not contagious, it cannot be passed to the baby through breast milk. However, new mothers may still experience breastfeeding challenges. For example, if the mother was very sick or medicated at the end of her pregnancy, she may have difficulty producing milk right away, especially if the birth was premature, as nearly 50% of lupus-pregnancies are. In this case, be patient, seek assistance from a lactation professional (early and often), continue to express milk, be available for kangaroo care, and ask for donor milk. A pre-term infant may have developmental challenges that make breastfeeding complex, but also very important. Along with the numerous well-known benefits of breastmilk, the milk of a mother with lupus, has properties that may help decrease the risk of the infant developing lupus later in life. In addition to utilizing the services of a lactation consultant, a new mother with lupus may 
consider hiring a postpartum doula to help manage physical recovery, baby care, and home care. As mentioned earlier, symptoms may be surpressed during the pregnancy, but the stress of motherhood could contribute to a flare up after the birth, especially if the child is fragile, or when the mother returns to work. 


Nutrition 
Nutritional choices neither cause, nor cure lupus, however, healthy food choices are an integral part of the overall treatment plan, especially during pregnancy. As a general rule, the diet should be well-balanced, anti-inflammatory  consisting of vegetables, fruits, oily fish, and limited amounts of whole grains, lean poultry, and beef. Avoiding the major inflammation causing foods, is as equally important. The goal of nutrition is to reduce inflammation and other symptoms, maintain strong joints and muscles, minimize side effects of medications, maintain a healthy weight, and reduce the risk of heart disease. 


Mental Health and Self-Care
Like many chronic illnesses, depression and anxiety are a risk for those living with lupus. The unpredictable pain, in combination with the emotional stress of coping with daily obligations, can often be too much to bear without intervention or support. It is vital that a self-care plan includes stress & pain management, regular exercise, a balanced diet, social support, rest, and regular mental health assessments. 


If you know a mother who is living with lupus, reach out to her and offer a bit more support than you have been, regardless of the age of her children. She's probably more tired than the average mother. If you know a woman with lupus who is trying to conceive, check in with her to make sure that she's making healthy choices the majority of the time. If you are a mother living with lupus, know that we think the world of you, we are cheering for you, and we support you and your amazing self. Take care. 

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