Yes, another memoir on a medical theme! I really do read a lot of them. My eye was drawn to The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future by Joselin Linder because of the medical mystery aspect: 14 members of Linder’s Ashkenazi Jewish family are the only known exemplars of their particular genetic disease, so rare it doesn’t have a name or surefire treatment protocol, but now at least has a location on a chromosome.
Linder’s awareness of her family’s peculiar medical problems began when her father, William, himself a doctor near their home in Columbus, Ohio, started having a persistent build-up of lymph (also known as chyle) in his abdomen – usually a sign of heart or liver failure. At one point doctors tapped four liters of the stuff from his lungs. Her father’s illness threw Linder, then a junior in college, for a loop; drugs and music started to replace academics. After he died, aged 49, in September 1996, she became a nomad, moving from Prague to San Francisco to Brooklyn and dabbling in different careers.
Only gradually did they all realize that the same thing had happened to William’s uncle, Nathan, in the 1960s and his grandmother, Mae, before that. While Mae lived to age 54, Nathan died at 34, even after treatment at NIH. Along with the lymphedema, a heart murmur was a common factor. William’s brother, Norman; Linder and her older sister, Hilary; and various cousins of their generation were diagnosed in this way. The author’s own symptoms were initially easily to ignore – swollen ankles and a low platelet count – but escalated in her thirties: a blocked vein in her liver meant she was in danger of bleeding out if she vomited.
It’s rare to be able to trace a genetic disease from its founder through to the present. In Linder’s case, her great-great-grandmother, Ester Bloom, is the first known sufferer. Researchers eventually isolated their family’s gene on the X chromosome, near the location for asthma. This explained why, historically, female family members had a better prognosis than males – they have one normal X chromosome and one diseased one; men only get the defective X chromosome – and why asthma medication helped to an extent.
There are a couple of chapters here on the basics of genetics that felt a little condescending to me; for anyone with a high school or A level biology qualification, the simplistic metaphors explaining the workings of DNA may seem superfluous. I also had trouble relating to Linder’s immediate reaction to her father’s death. Although he’d been severely ill for years by then, her attitude still seems a little heartless. Of the decision to take him off dialysis, she writes, “I was on board. It was time to call it a day.” When the family went around expressing opinions, she said, “I think it’s time, Dad. You’ve been through so much,” to which he replied “F— you”! An ex-boyfriend’s suicide a couple years later affected her much more than her own father’s death. Grief affects people in strange and unpredictable ways, I guess.
What I most appreciated was how the book sensitively reveals the ways a genetic condition complicates life, especially in America: Linder had to do without health insurance for 10 years, having been denied it in Ohio on the grounds of a pre-existing condition. In addition, she and her sister faced a quandary common to those who carry genetic diseases: should they have children? While Hilary underwent pre-implantation genetic diagnosis, a form of IVF, to bear healthy twins, Linder ultimately decided against having children.
I enjoyed the earlier part of this genetic quest narrative a bit more than the later material about Linder’s symptoms. Still, I can recommend this to viewers of House and readers of Susannah Cahalan’s Brain on Fire and the like.
The Family Gene is released by Ecco today. With thanks to Beth Parker and James Faccinto for the electronic review copy via Edelweiss.
Very, very interesting. And most pertinent to you and your early interest in genetics. Did you know my interest was piqued by genetics while in H. S. biology, and I planned to pursue it in Pre-med? Sent from my iPhone
No, I don’t think I knew that specifically. That must have been before we ever knew Grandma was sick with PKD?
That does sound like a fascinating read. I guess they have to explain genetics in case people don’t know, but perhaps they could have an appendix for it so people who do know don’t get bogged down in detail they already have down?
I did ask myself how I would have covered all the basics without assuming too much or too little knowledge. I can see how it was a difficult balance to try to achieve! It’s just that the metaphors/analogies she used felt a little childish to me.
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A recent article by the same author may shed some light on the emotional oddness you mentioned: she writes about learning that she has alexithymia (emotional blindness).
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How interesting! Thanks for sharing the link. I’ll follow up on her story.