Having a rare genetic disease that you share with about one in 5,000 people
could be isolating.
But Christian D’Angelo feels like part of a community.
His team at Hoag Health Network — doctors, nurses, specialists and
staff from the
Heart and Vascular Institute — will join him Saturday for the Southern California Walk for Victory
at TeWinkle Park in Costa Mesa in honor of Rare Disease Day.
D’Angelo found out when he was about 5 that he had Marfan syndrome,
a potentially life-threatening genetic disorder that weakens body tissue
and can endanger the heart.
Twice a year, he went to Hoag Hospital in Newport Beach for monitoring
to make sure his
aorta, which is extending and ballooning, did not rupture.
Since taking more responsibility for his health journey in recent years,
D’Angelo said he has been folded more deeply into the Hoag family.
“I’ve finally turned this corner from ‘These are all
doctors that I see’ to ‘Oh, these are all doctors that I’m
doing life with,’” D’Angelo said. “I can go and
just sit and really talk very casual — not patient to doctor but
really friend to the friend who just has more information than I have.”
The Walk for Victory, presented by the
Marfan Foundation, begins at noon and lasts until 3 p.m. TeWinkle Park is at
970 Arlington Drive.
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