A woman from Georgia has shared her harrowing experience of being misdiagnosed with HIV during pregnancy, only to discover years later that she was actually suffering from lupus, an autoimmune disease affecting many members of her family.
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At the age of 19, Shontia Matlock’s life took an unexpected turn when she became pregnant. She recalls the troubling onset of severe symptoms during her pregnancy that began to affect her daily life. “When I got pregnant, everything started going downhill,” Matlock, now 39, recalled in an interview. She experienced debilitating fatigue, extreme swelling, painful blisters on her hands and feet, and persistent rashes, which left her struggling to carry out routine activities.
Following the birth of her child, her health further deteriorated. Matlock described a cascade of health issues, stating, “After I had my baby, everything just went haywire.” Her condition worsened as she faced complications affecting her kidneys, erratic blood levels, and alarming physical symptoms, including significant hair loss. Unaware of the severity of her situation, she continued to seek answers from her medical team.
Eventually, Matlock visited her doctor, only to receive news that shattered her world. Initial testing suggested she had HIV. Shocked and dismayed, she shared that her “heart sank” upon hearing this diagnosis. She expressed disbelief and asked her doctor, “Are you sure?” The emotional toll of waiting for further tests was heavy; Matlock described crying daily as she grappled with the fear of living with a misunderstood condition.
Her initial diagnosis was later contested when follow-up tests revealed that she did not, in fact, have HIV. This prompted her doctors to delve deeper into her family history for clues about her troubling symptoms. It was through this exploration that Matlock was eventually diagnosed with lupus, a condition known to afflict her mother.
Matlock explained that when lupus was suggested as a possible diagnosis, her mother’s experience played a vital role in guiding her medical team. “She told me, ‘You need to tell them about your family history,’” Matlock noted. This information helped doctors connect the dots, leading to a definitive diagnosis that she described as a relief after months of uncertainty. “I finally had an answer,” she added.
During her recovery journey, Matlock leaned on her mother for guidance and support. Determined to improve her health, she made significant lifestyle changes including healthier eating and consistent medication adherence. She also turned to artistic expression during her difficult times, using painting as an emotional outlet during flare-ups when her health kept her indoors.
Matlock is currently being treated with Saphnelo, a new intravenous medication for lupus. She expressed satisfaction with her current treatment, noting a marked improvement in her symptoms. “From where I came from to now, it’s a total difference,” she stated. She indicated that her condition has stabilised significantly, allowing her to regain mobility and even restore her hair and eyebrows.
Reflecting on her experiences, Matlock hopes to inspire others facing health challenges to take control of their narratives. “Listen to your body; it will tell you something is wrong before any doctor will,” she implored. She emphasised the importance of self-advocacy in the medical world, urging individuals to raise concerns if something feels amiss.
As she shares her story, Matlock highlights the significance of self-care and the necessity of consulting with healthcare professionals regarding potential treatment options. She encourages others facing similar diagnoses to explore their choices, stating, “You never know until you try.”
Through her experience, Matlock not only seeks to shine a light on the journey to accurate diagnosis and treatment but also to foster a sense of community and dialogue among those living with lupus or other significant health challenges.