Saturday, July 18, 2009

Bridging the Culture Gap - NYTimes.com

One afternoon not long after I finished my training, two sisters, both well-respected professionals in their late 40s, came to the hospital clinic. Both sisters had hepatitis B, and the older sister, like a fair number of chronic hepatitis B patients, had developed liver cancer. She and her sister were hoping that we might be able to remove the tumor.

I remember watching the sisters' faces turn grim as the younger of the two drew a family tree on the flimsy paper covering the examining table. Under each branch, she wrote out the names of siblings and parents, and I shuddered over the number of "L.C.'s," her abbreviation for "liver cancer," this sister scrawled next to a name.

Their parents had immigrated to the United States from China a half-century earlier. In the midst of raising six children, their mother developed and then died from inoperable liver cancer. A little over two decades later, two of their siblings succumbed to the same lethal disease — one brother a few months prior to the sisters' visit to my clinic, and another brother a few months later.

After the first brother had died, the family members assumed that his untimely death was due to bad luck or perhaps a "cancer gene." But soon after the second brother was diagnosed, the remaining siblings sifted through their family's medical records. They discovered that both brothers had had hepatitis B, a viral infection that predisposes individuals to cirrhosis, liver failure and cancer; and they realized that their mother's symptoms in the years prior to her death were consistent with progressive liver failure from cirrhosis.

They learned that while the incidence of hepatitis B is higher among Asians than among other racial groups in the United States, Chinese are at the highest risk, particularly those who hail from Fujian, the province from which the sisters' parents had immigrated. Infections could spread insidiously through "vertical transmission," where infected mothers would unknowingly pass the virus to their newborns during birth. The children then go on to develop a chronic active infection and are predisposed to developing early cirrhosis and liver cancer. If they were female, they run the risk of passing the virus on to a whole new generation of family members.

Over the course of the next few months, the surviving siblings learned that every one of them had been infected with hepatitis B, probably from their mother at birth. While each had developed varying degrees of cirrhosis, they realized that without the necessary close surveillance by a liver specialist, they could die from liver cancer as their brothers and mother had. The sisters spearheaded the effort to find liver specialists who would follow all of them, and it was during this search that they discovered the older sister's tumor and my clinic.

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http://www.nytimes.com/2009/07/16/health/16chen.html?em=&pagewanted=print