The Carriers
What the Fragile X Gene Reveals About Family, Heredity, and Scientific Discovery
“Every disease has its own narrative,” psychiatrist Anne Skomorowsky writes in this lucid, comprehensive history of Fragile X, a genetic mutation that causes a range of physical and behavioral problems. Introducing affected families and communities, this is a compassionate medical account.
First described in the 1940s, Fragile X arises from a mutation on the X chromosome. It leads to developmental issues and intellectual disabilities. Even those who are only carriers can be affected, undergoing menopause before forty or experiencing fibromyalgia, migraines, or ovarian insufficiency. There can also be “subtle differences in personality in some carrier women.” Fragile X often remains undiagnosed in families, however, because of its set of its seemingly unrelated symptoms.
Skomorowsky gives a quick sketch of genetics and emphasizes women scientists’ role in the understanding of Fragile X. Julia Bell was among the first to identify the disorder; she explored the general phenomenon of X-linkage, which is also involved in hemophilia. And Randi Hagerman has researched Fragile X for decades, looking for empirical reasons behind its anecdotal groupings of symptoms.
The book is shaped around case studies, including one of the Patels, a South Asian family with three middle-aged children who have intellectual disabilities and autism; one of the Solitar family, whose three teenage children have emotional and developmental difficulties; and of the village of Ricaurte, Colombia, a hot spot for Fragile X—there, brought over by Spanish colonists who were carriers. But it also delves into medical ethics, as around in utero testing for the mutation, and the practicalities of living with Fragile X (reducing stress and avoiding toxins are two of its chief pieces of advice).
Blending stories and interviews with science and statistics, The Carriers balances the worldwide scope of a disease with its intimate details.
Reviewed by
Rebecca Foster
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