Conor’s story
Conor actively advocated for people with disabilities. He told college staff that the new walkway from disability services to another campus building had no ramp. Then, he worked with disability services to get a ramp built. Conor also scored the winning goal in the national championship game of the United States Power Soccer Association. Conor had Duchenne muscular dystrophy.
Having Duchenne meant his muscles, including his heart and muscles that control breathing, got weaker. Better medical care over the years means people with Duchenne are living into adulthood.
Living independently is one part of transitioning to adulthood. Managing medical care is another. Individuals with Duchenne see many different specialists. Care coordination is often the responsibility of the primary caregiver. Conor’s mom told doctors about Conor’s medicines, treatments, and other care management details.
She shared, “There was a nurse coordinator at the Muscular Dystrophy Association clinic in the children’s hospital. [After aging] out of the children’s hospital, it was a problem. If Conor went to the emergency room…the first doctor I called was the pulmonologist (a lung specialist).”
As they transition to adulthood, men like Conor begin managing their own care. “I decided that eventually I have to manage my medical care, so I should try to understand it better,” said Conor. People should “teach kids how to manage their medical expenses and their living situations after college. You can make a difference if you really try.”
Conor passed in 2018. CDC thanks his family for sharing his story.
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