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CommonHealth: Living With CLOVES Syndrome
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Riley Cerabona lives with a rare disease known as CLOVES Syndrome which, as she puts it, "creates lumps and bumps inside and outside her body." Only about 100 people have been diagnosed with CLOVES worldwide.
Riley is currently participating in a Children's Hospital clinical trial for a new medication to treat her disease.
We go beyond the medical tests and treatments to try to understand how Riley's family, specifically her mother and father, Kristen Davis and Marc Cerabona, cope with their daughter's condition.
Guests:
- Kristen Davis, Riley's mom and executive director of the CLOVES Syndrome Community, a nonprofit created to support and connect those families who are living with CLOVES
- Carey Goldberg, co-host, WBUR's CommonHealth
More:
This segment aired on May 8, 2012.