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Johnnie died today, just as his brother, Derrick, died the year before. He was 32, with the organ damage expected in
an 82-year-old. The list of transgressions against his body included severe anemia, strokes, end-stage renal disease,
pulmonary hypertension with right heart failure, liver damage from iron overload, seizures, gout, and disabling
pain—all the result of the progressive, relentless march of sickle cell anemia.

I met Johnnie through his brother, Derrick, one of the first patients in our new adult sickle cell program. Johnnie and
Derrick were the remaining 2 of 3 brothers born with sickle cell disease. Their bond was obvious. Johnnie would
occasionally accompany Derrick to clinic visits, but although Derrick tried to convince Johnnie to see us, Johnnie
steadfastly refused. He felt fine…sometimes. He was distrustful of all health care workers and didn’t want to be
“experimented on.” I never expected to become deeply attached to Johnnie.

It began one day when Johnnie called the emergency pager to beg me to intervene in the emergency room, where his
brother Derrick was about to be discharged. He sounded panicked. He was convinced Derrick was really sick and
needed to be admitted. Turned out, Derrick had acute chest syndrome, one of the many life-threatening complications
of sickle cell disease. Johnnie was right. Derrick was admitted.

Although Derrick made it through that admission, he died within the year. After Derrick died, Johnnie was scared.
He started coming to clinic. He took his medications and talked with our social worker. He called regularly for help,
coaching him through treating his pain at home instead of going to the emergency room. He did better for a while.

He began to trust us. In fact, he became so comfortable with us, that one night he woke me at 11 PM to ask 
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