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The Vascular Anomalies Experience Journal

The Vascular Anomalies Experience Journal is a collection of stories, videos, and personal experiences from patients, families and providers describing life with a vascular anomaly. The Journal represents the vascular anomalies community's “collective wisdom,” and touches on all aspects of what it means to have a vascular anomaly. We invite you to visit and explore the Experience Journal.

If you’re interested in sharing your or your family’s story, visit the Experience Journal submission page.

In Arianna's own words

Arianna Faro struggled for years with the challenges of living with Klippel-Trenaunay (KT) syndrome, but won't let her disease stop her.

Traveling 2,700 miles to save Jesus’s arm

For most of his life, doctors told Jesus Barradas' family that his fibro-adipose vascular anomaly (FAVA) was so severe that wouldn’t be able to keep his arm. Until he came to Boston Children's.

Ryan's story: Living with Sturge-Weber Syndrome

One in 10 children are born with a birthmark. In most cases it's harmless. In Ryan's case, it was a sign of a larger problem, a vascular and neurological anomaly called Sturge-Weber Syndrome.

Rolensky’s story: Saving his heart by fixing his brain

When a young mother named Gerdline brought her four-month-old son Rolensky to a hospital in Haiti, she had no idea that his heart was failing because of a one-in-a-million blood vessel malformation in his brain called a Vein of Galen malformation.

Do I have the strength to be a marathon parent?

Kristen Davis talks about the unique day-to-day trials and triumphs involved in raising her daughter Riley, who has rare vascular anomaly called CLOVES syndrome. Kristen also wrote about the reasons why research matters to her family.

Caitlin's new liver

Within hours of her birth, it was clear that something was very wrong with Caitlin's liver. That something was a hepatic hemangioma.

The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”
- Sandra L. Fenwick, President and CEO

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