When I was 20 weeks pregnant, my doctor recommended an amniocentesis so we could find out what was causing concerns during my pregnancy. They took amniotic fluid for testing, and that's when my husband and I learned our daughter had a rare genetic disorder called Fanconi anemia (FA). We found out that we were both carriers, something we had never known.
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Amy Vangel
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Amy is 30 years old and lives with her fiancé, Matt in Weymouth, Mass., where she currently works as a nanny for two young boys. She was diagnosed with FA in 1995 and underwent an unrelated stem cell transplant in 2002. Recently, she was diagnosed with squamous cell carcinoma and was successfully treated. Amy has been a guest speaker at Dr. Alan D’Andrea’s class at Harvard Medical School, where she shared her experiences and perspective as an FA patient with early-stage researchers. Amy is open about sharing her story, her knowledge about growing up with FA and how it impacts everyday life. Described as positive and spunky, Amy is looking forward to bringing her perspective of living with FA to help bridge connections between patients and scientists. Amy hopes to provide her personal insight for those who are dealing with FA to know that they and their families are not alone and can live happy lives with this diagnosis.
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