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8 | InTouch AUTUMN 2026 MARK CARRINGTON’S BATTLEWITH A RARE MUSCLE DISEASE From rapid decline to remarkable recovery; a story of determination, science, and self-advocacy. FEATURE In 2021, Mark Carrington’s life changed with alarming speed. Once active and working, he began experiencing muscle weakness around his head, neck, and shoulders. Within months, that weakness spread to his core and legs. His muscles wasted away and doctors warned of grim outcomes. Fewer than 200 cases of his condition had been recorded worldwide since 1966. Yet today, Mark walks for two hours every day and is planning a return to golf. His doctors call it remission. Mark calls it cured, “It’s gone until it’s not.” Mark's story of his battle with sporadic-late onset nemaline myopathy associated with MGUS, and how determination, medical intervention, and personal responsibility helped him reclaim his life. A Rare and Devastating Diagnosis Mark was diagnosed with sporadic late-onset nemaline myopathy (SLONM) with monoclonal gammopathy of undetermined significance (MGUS) — the body makes an abnormal protein called a paraprotein. Although not a cancer, people with it have a slightly higher risk of developing myeloma (a cancer of blood cells called plasma cells). Unlike inherited forms of muscle disease, Mark was not born with this condition. It developed later in life and doctors believe the low-level cancer marker in his blood was triggering the muscle deterioration. The progression was rapid and frightening. Within a year, he went from healthy and active to facing the prospect of a wheelchair. More concerning than the visible muscle loss were the unseen threats: the muscles that support breathing, the heart and the ability to swallow and eat. When those systems are involved, the stakes become life-threatening. Medical specialists did not encourage exercise due to the severity of muscle damage. Some even suggested he “let it take its course.”Mark refused to accept that narrative. Defying the odds Taking Control of His Own Survival At 66, Mark was told his age could work against him, especially when it came to aggressive treatment options like stem cell transplantation. He challenged that thinking. “You shouldn’t focus on age,”he says.“Either you’re strong enough or you’re not.” In 2022, he underwent an intense treatment year that included steroids, intravenous immunoglobulin (IVIG), chemotherapy and a stem cell transplant. The transplant required approval from a transplant committee panel. Mortality risks increase with age, and he was reminded repeatedly that he was “of your age.” But Mark pushed forward and believes the stem cell transplant was the catalyst and “a complete reboot.” Mark Carrington