Walk for Victory at TeWinkle Park to honor Rare Disease Day

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.

For more information, visit marfan.org.

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