My Mind, My Body, My Journey™ 

Lupus is an autoimmune disease that causes the body to attack its own tissues and organs. Lupus causes inflammation which can affect your joints, skin, kidneys, blood cells, brain, heart, and lungs. Genetic factors often contribute to the development of Lupus; along with environmental factors such as exposure to sunlight, ultraviolet light, infections, use of antibiotics and sulfa drugs.  

Lupus is not always easy to detect as it depends on which body symptoms are affected. It is common to experience the following symptoms: 

• Headaches 
• Chest pain when breathing deeply 
• Low fevers 
• Pain or swelling in your joints 
• Hair loss 
• Extreme fatigue  
• Swelling around your eyes and extremities 
• Sensitivity to light (both sunlight and fluorescent light) 
• Sores in your mouth or nose 
• Rash on the nose or cheeks 
• Extremities turning blue or white when you are cold or feeling stressed  

Lupus overwhelmingly impacts women as 90% of people living with lupus are women. Lupus develops during the childbearing ages for women (between ages 15-44). Black women, Hispanic, and Asian women have a higher prevalence of Lupus when compared to White women.  

There are delays in diagnosing Lupus due to the symptoms mimicking other diseases.  On average, there is a six-year delay in the diagnosis of Lupus from the onset of early symptoms¹. Sixty-three percent of people living with Lupus reported being misdiagnosed and fifty-five percent reported seeking care from more than four providers prior to being diagnosed with Lupus¹. About twenty-five percent of people with Lupus have either Medicaid or Medicare as their insurer¹. 

There are four types of Lupus, Systemic Lupus Erythematosus (SLE), which is the most usual form of Lupus affects 70% of people living with Lupus. SLE often causes the inflammation of multiple organs or organ systems in the body. When Lupus causes the kidneys to experience inflammation, it is called lupus nephritis and can impact the body’s ability to filter waste from the blood. When Lupus causes inflammation of the nervous system and brain, it can cause memory problems, confusion, headaches, and strokes. It is often common to experience high fevers and behavioral changes. When Lupus impacts the cardiovascular system, it can contribute to hardening of the arteries, which can increase the risk of a heart attack. There can be problems with bleeding and blood clotting as well as a reduction in the number of healthy blood cells.  

When Lupus impacts the skin, it can cause rashes, sores, and ulcers throughout the body. A butterfly shaped rash that covers the nose and cheeks is common among individuals with this type of Lupus. This form of Lupus is called Cutaneous Lupus (CLE) and affects about 15% of individuals living with Lupus. Drug-induced Lupus affects about 10% of individuals living with Lupus and is caused by the prescription medications mentioned above. This type of Lupus has the same symptoms as SLE but is less likely to affect major organs. The symptoms resolve six months after the discontinuation of medication. The final type of Lupus is called Neonatal Lupus, which occurs in newborns and mostly resolves six months after birth. Symptoms include liver problems, low blood cell counts, and skin rashes.  

Although Lupus, is challenging to diagnosis, pregnant women are recommended to have testing to identify risk factors. Neonatal Lupus is associated with anti-SSA/Ro and/or anti-SSB/La antibodies from the mother that affects the fetus. Testing during the 18^th and 24^th weeks of pregnancy is recommended, and when at-risk mothers are identified treatment can resolve the condition prior to the birth of the infant. If Lupus is detected during your pregnancy and you adhere to treatment recommendations, it is likely that you can deliver a healthy baby, as most infants born to mothers with Lupus are healthy.  

Women living with Lupus, can become pregnant; however, it is recommended that you strive to be symptom free prior to becoming pregnant. You may have a specialty treatment team during your pregnancy, and it is likely that your pregnancy will be considered high-risk. Risks such as miscarriage, still birth, and pre-eclampsia are common among pregnant women with Lupus. In addition to your treatment team it is recommended that pregnant women with Lupus deliver in a hospital with a neonatal intensive care unit (NICU). If you have Lupus and want to breastfeed, there are no contraindications, but you should be mindful of the medications prescribed that could be present in your breastmilk.  

Lupus has often been described as an invisible disease, as individuals with the disease can appear healthy. A recent survey indicated that sixty-three percent of Americans have never heard of Lupus or know little about the disease². If you would like to know more about Lupus, the Lupus Foundation of America is a thorough source. Lupus awareness is symbolized by a purple butterfly. Purple butterflies have various meanings like strength, magic, love, spiritual awakening, honor, and creativity. For those living with Lupus, the purple butterfly can represent your strength as you continue to live your life despite the physical, mental, and financial impacts of Lupus.  

Wishing You Health and Happiness  

References 

1. Sawah A, Daly R, Foster S, Naegeli A, Benjamin K, Doll H, Bond G, et al. Understanding delay in diagnosis, access to care, and satisfaction with care in Lupus: Findings from a cross-sectional online survey in the United States. Presented at the European League Against Rheumatism (EULAR) 2015 Annual Conference. June 2015. Rome, Italy.  

2. Lupus Awareness Survey for the Lupus Foundation of America (2019) [Executive Summary]. Washington, DC.  https://www.lupus.org/news/2019-lupus-awareness-survey-summary. June 25, 2019.