Five years ago, an organization for a rare disease I had never heard of, Fanconi anemia (FA), contacted me, hoping I could help their community. For the first time, individuals with FA—a rare disorder once not survivable beyond childhood—were living into adulthood, facing new opportunities and challenges. Since then, I have become deeply invested in a community few people are aware of.

As one of the only psychologists who both has a rare disease and researches rare diseases, people from rare disorder communities reach out to me from time to time. Growing up with Moebius syndrome—a rare disorder involving facial paralysis and limited eye movement—sparked my curiosity in psychology. There was almost no mental health research on Moebius syndrome until I came along. Recognizing similar psychosocial challenges across quite different rare disorders, I've since broadened my research to examine mental health, stigma, and social support among people with all sorts of rare disorders.

Fanconi anemia was named for what was once its most consequential and deadly symptom—bone marrow failure. Lynn and David Frohnmayer started the Fanconi Anemia Research Fund (now called Fanconi Cancer Foundation; FCF) in 1989 when they learned several of their children had this heritable condition. Their goal was to fund medical research to extend the lives of people with FA. And they were successful. They funded research that developed effective bone marrow transplant protocols for people with FA, curing them of anemia. However, as children with FA reached young adulthood, a new challenge was discovered: A number of them were being diagnosed with aggressive, deadly forms of cancer that usually affect people far older than them. Further research revealed the true nature of the condition. FA is now understood to be a DNA repair disorder, making people with FA highly susceptible to aggressive cancers. The underlying DNA repair disorder means that bone marrow transplants and cancer treatments are especially tricky—these usually involve chemotherapy or radiation, which may trigger cancer in this population.

Thanks to research facilitated by FCF, the life expectancy of people with FA is 10 to 15 years longer than when the foundation began. The first generation of adults with FA is now facing decisions about

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