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An Early Diagnosis Saved Him; Now He Advocates For Others
“It was the best of times, it was the worst of times, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair.” Charles Dickens’ words from A Tale of Two Cities echoed in Antwain Robinson’s mind as he reflected on his battle with vasculitis. His journey was marked by sharp contrasts: moments of despair followed by glimmers of hope, darkness that eventually gave way to light.
Antwain’s story began in the late fall of 2022 when he was overwhelmed by an unshakable exhaustion, one that even his usual caffeine fix could not remedy. He brushed it off, attributing it to the stress of the season and the demands of his job. But the fatigue deepened, casting a shadow over his once vibrant life. By the time his annual physical examination rolled around in mid-December, he knew he needed to address his growing concern.
His primary care physician (PCP) conducted a thorough check-up, including blood work, an EKG, and a COVID test. The results were within normal range, offering a moment of relief— “the best of times,” Antwain thought. But the reprieve was short-lived. Despite the lab results, his fatigue persisted, gnawing at him as Christmas approached. The “worst of times” had begun.
During Christmas week, Antwain’s symptoms escalated. His energy levels plummeted, disorientation set in, and night sweats became an ordeal. Christmas season came and went.
New Year, 2023 new symptoms began to emerge, a cough, shortness of breath, rapid weight loss. Concerned, he reached out to his PCP, who advised him to seek urgent medical care. Fearful of what was happening to him, Antwain went to the emergency room, where doctors suspected a bronchial infection and prescribed steroids. While the steroids provided some relief, Antwain’s instincts told him it was more serious. His PCP, too, was uneasy and referred him to a rheumatologist.
By mid-January, his rheumatologist conducted a new round of blood tests, and the results were alarming.
“It was bizarre since I had just had tests a couple of weeks before back in December,” Antwain recalled.
An Early Diagnosis
All his major blood markers were out of range. “She said, ‘I think you have vasculitis.’”
The term was foreign to him, and it carried a weight that he could not yet comprehend. The rheumatologist explained that the only sure way to confirm a diagnosis was with a biopsy. She suspected his kidney function was affected by the vasculitis. She told him to leave her office and go straight to the nearest hospital ER for an evaluation and kidney biopsy.
In the hospital, Antwain found himself in a race against time. After a series of initial testing, the medical team started him on high doses of steroids while waiting for insurance approval for the biopsy. For three tense days, they monitored his condition, battling both his illness and the bureaucracy of healthcare.
Finally, the attending physician decided to proceed with the biopsy and the initial review confirmed the vasculitis diagnosis. It had been six weeks from his annual physical to an official diagnosis.
“That was the worst of times: the hospitalization, having the kidney biopsy and the diagnosis for vasculitis, something I had never heard of before,” Antwain shared.
But amidst this darkness, he said, a new light appeared. He was referred to Doctors W. Hayes Wilson and Kimberly Wilson, a husband-and-wife rheumatology team, who were vasculitis experts. Dr. Kimberly Wilson, who took over his case, and became not only his doctor but his advocate, guiding him through the complexity of treatment and insurance negotiations.
Dr. Wilson, along with his nephrologist, Dr. Obeid, prescribed a rigorous treatment plan, warning Antwain that the road ahead would be long and challenging. They put him on a two-year treatment plan.
Antwain is not one to back down from a challenge. High-dose steroids were just the beginning.
Becoming His Own Advocate
“We were able to get an early diagnosis and treatment protocol,” he said. “We were able to stop the progression of the disease in my kidneys. I have learned to advocate for myself. The one choice we have is whether we are positive or negative.”
This new season, a “spring of hope,” was defined by Antwain’s determination to take control of his health. He dove into research, arming himself with knowledge from trusted sources like the Mayo Clinic and the Cleveland Clinic. He also connected with the Vasculitis Foundation, joining support groups, and attending webinars that provided both education and comfort. One of these webinars, a poetry class aimed at healing through creativity, led to the publication of one of his poems – “I Am Too Young To Feel So Old” — a testament to the power of art in the face of adversity.
Antwain’s journey was not just about medical treatment; it was about holistic healing. He made significant lifestyle changes, adopting a vegetarian and mediterranean diet. He also cut out caffeine and began drinking copious amounts of water to keep his kidneys healthy.
But most importantly, he and his wife strengthened their emotional and spiritual bond, turning to their faith as a source of peace and resilience. “We started a season of what we called the ’12 Healing Promises of God,’” Antwain said. “This season of life evaluated our faith and made it stronger. It moved the needle on our spirituality to a higher level.”
Advocating for others
Antwain knows he was fortunate to receive an early diagnosis. Each doctor he encountered played a crucial role in steering him toward the expertise he needed. Now, he is committed to giving back by raising awareness about vasculitis and supporting the Vasculitis Foundation’s mission.
He believes in the importance of educating healthcare providers and expanding research to improve the lives of those diagnosed with this often-overlooked disease.
“For every me, there is a person who didn’t get diagnosed in time and is still suffering, or has died from this disease,” Antwain said. His story, much like the Dickens tale he quoted, is one of contrasts—hope and despair, light, and darkness, but ultimately, a triumph of the human spirit.
Through his advocacy, Antwain hopes to light the way for others who may be walking a similar path, ensuring that their journey, too, can move from darkness into light.