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I look fine, but my body is fighting a war within -Pregnancy-induced lupus warrior

Every pregnancy has some risk of problems, experts say, making it a somewhat ‘expensive’ venture not just in monetary terms, but also in terms of possible complications that may affect the mother and her unborn baby, as was the experience of Rabi Ibrahim Booth, who not only had a preterm baby but also developed pregnancy-induced debilitating auto-immune disease called lupus. SONIA OKERE shares the story

In 2019, Rabi, a Kano State indigene who lives in Abeokuta, Ogun State, was expecting her second child. However, one day, towards the end of her second trimester, she noticed her underwear was drenched with water. Worried about her baby’s well-being, she immediately went to the hospital where she had been receiving prenatal care. Upon examination, the nurses were alarmed to discover that her cervix was beginning to dilate and the amniotic fluid was leaking.

“I was six months pregnant when the amniotic fluid began leaking prematurely, a condition known as preterm premature rupture of membranes (PPROM). Although I was registered at a private hospital, the doctors quickly referred me to the Federal Medical Center in Ogun State after examining my condition.

I was six months pregnant when the amniotic fluid began leaking prematurely, a condition known as preterm premature rupture of membranes

“There, the doctors informed me that my pulse was dangerously high and advised that I needed to terminate the pregnancy to save my life. When I refused the suggestion, they kept me on bed rest and closely monitored the situation. On the sixth day, a follow-up scan revealed that the amniotic fluid had almost dried up, and the chances of my baby surviving were very slim.

“Shortly after, I began experiencing contractions, and within moments, my baby was born. He was nonresponsive at birth, but the medical staff worked tirelessly to revive him. He was then placed in an incubator. We spent three months in the hospital, during which my child faced several complications. Despite the challenges, I am deeply grateful that he survived, and today, he is a healthy, growing boy.”

my pulse was dangerously high and doctors advised that I should agree to have the pregnancy terminated to save my life. I refused

The unexpected diagnosis
While Rabi was caring for her baby in the hospital, she began experiencing symptoms such as joint and muscle pain, along with general body weakness. Initially, she attributed these issues to the stress of her hospital stay. Unbeknownst to her, these symptoms were actually related to a chronic disease.

While narrating her experience, she said, “After we went back home, I noticed that I was getting weaker by the day and my chest was hurting so much. My legs and hands were swollen, and at one point, I couldn’t lift my left arm at all. The situation became so overwhelming that I struggled to manage any household chores, and I constantly felt as if I was on the verge of losing consciousness.

“When I sought medical attention, several scans were performed. The results revealed a grave illness called systemic lupus erythematosus (SLE). The doctors explained that inflammation caused by lupus had led to fluid buildup around my heart and lungs. I was referred to the University College Hospital, UCH, Ibadan, where I underwent two heart surgeries and a lung surgery. Thereafter, a drainage tube was inserted into my chest to remove the excess fluid and prevent further complications. I spent many months in the hospital while my mother was taking care of my newborn baby.”

The situation became so overwhelming that I struggled to manage any household chores, and I constantly felt as if I was on the verge of losing consciousness

What is lupus?
According to medical experts, lupus is a chronic autoimmune disease in which the body’s immune system mistakenly attacks its own tissues and organs, causing widespread inflammation and damage.

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The National Institute of Health notes that the exact cause of lupus remains unknown, but research indicates that certain factors, including genetic predispositions, pregnancy, environmental factors like viral infections, sunlight, and smoking, as well as abnormalities in the immune and inflammatory responses, may trigger this condition.

Indeed, experts warn that the hormonal and physiologic changes that occur in pregnancy can induce lupus activity; adding that the hormone prolactin, which rises during pregnancy, is associated with lupus activity during pregnancy.

The Institute also states that the most common form of lupus is systemic lupus erythematosus (SLE), which can affect different parts of the body, including the skin, joints, kidneys, heart, lungs, brain, and blood cells.

I underwent two heart surgeries and a lung surgery

Still narrating her journey, Rabi said, “I’ve been living with lupus for over five years, and I can honestly say it has been a roller coaster journey. I was informed that there is no cure for lupus; however, the symptoms can be managed with medication.

“I’m supposed to visit the hospital at least twice a month for tests, which determine the medications I need. Unfortunately, I lost my job during the COVID-19 pandemic, making it impossible for me to afford my medications.

“As a result, my symptoms worsened. For instance, two years ago, I woke up to find my hair falling out due to the disease attacking my hair follicles. So, I had bald patches and was receiving injections in my head. Shortly afterward, lupus affected my legs, causing a painful sore that wouldn’t heal. My eyesight also deteriorated during this period.

“The last time I was hospitalised was due to kidney inflammation, which also impaired my cognitive abilities. Thankfully, after receiving treatment, I haven’t had any serious flare-ups since then.”

I lost my job during the COVID-19 pandemic, making it impossible for me to afford my medications

Challenges of living with lupus
Rabi highlighted the lack of updated medical equipment for screening lupus patients, particularly in government hospitals. She mentioned that only a few private hospitals have the standard equipment necessary for accurate screening. Additionally, she noted that the drugs required for treatment are not just expensive but also difficult to find.

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“Due to financial constraints, I haven’t been taking my medication in the last few months, but God’s sustenance has been my unwavering lifeline,” she added.

According to the Johns Hopkins Lupus Center, some visible symptoms of this disease include rashes, hair loss, weight changes, and many more. During the period the disease attacked her hair follicles and legs, Rabi shared how some people made hurtful remarks, without understanding the struggle behind the change in her appearance.

two years ago, I woke up to find my hair falling out due to the disease attacking my hair follicles

However, despite these challenges, she continues to focus on self-acceptance and the support of those who truly understand her journey.

Becoming a single mom
According to an unknown author, “Even the sweetest love can turn bitter, leaving hearts that once beat as one to drift away.” This is the case of Rabi, whose husband opted for a divorce at a time she needed a companion so much.

“In the last five years, I haven’t had any direct communication with my ex-husband. My kids stay with me, but sometimes, he sends someone to pick them up during the holidays.”

When asked about her source of strength and inspiration during challenging times, she shared: “My faith in God has been my unwavering anchor. In the darkest moments, when hope seemed lost, His faithfulness has been my guiding light.

“My children are my biggest motivation, and I am also grateful for my family and friends, who have supported me greatly.

the hormonal and physiologic changes that occur in pregnancy can induce lupus activity

“Living with lupus requires avoiding physical and emotional stress to prevent flares. I’ve been surviving as a single mom-of-two by selling fabrics online. So, whenever I hear people say, ‘At your age, you haven’t achieved this or that,’ I smile, knowing that wealth and material possessions can’t compare to the value of good health.

“Some individuals have all the wealth but suffer from terminal illnesses and would trade it for good health. Then there are people like me, with neither wealth nor perfect health, yet I consider every day a precious gift.

“If you are healthy today, take care of your body, listen to it, and nurture it. Remember that life is precious, and it can change in an instant. So be kind to those of us who are struggling with chronic illnesses.

“We may look fine on the outside, but our bodies are fighting a war within. Thank you.”

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