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Ed Yeates Reporting The University of Utah and a family in Provo are closely following Senator Tim Johnson's recovery from a blood vessel disorder called AVM. They live and deal with that condition and more every day.
Interventional radiologist Allene Burdett looks at a CT scan of an abnormal tangle of blood vessels in the brain. She sees these in patients all the time because the University of Utah is one of only eight HHT Centers in the country.
HHT is the hereditary syndrome that puts people at high risk for arteriovenous malformations, or AVM's as they're called. Vessels in the brain or lung inflate abnormally like balloons.
Jamie McDonald says we don't know what percentage of patients with AVM's have inherited the genetic risk.
Why?
Jamie McDonald, University of Utah HHT Clinic: "Because most people who show up at a hospital having complications from a brain AVM get that attended to without any evaluation of whether there might be an underlying hereditary cause in their case."
But that is the case for a Provo family.
For Allison Conger and her family, that 50-50 risk hit the family hard.
Allison along with her dad, brother, and two of her three children, have the HHT gene. Another of Allison's brothers, a sister, and her one-month-old baby have died from it.
Allison had a stroke when she was only nineteen years old.
Allison Conger: "For me, because I had this screening, I was able to take care of it ahead of time and that's sort of the steps now that they're taking for the generations."
Allison leads a normal life. The kids do, too. So do other members of the family.
They now all monitor their conditions carefully, taking preventive action before a crisis happens.
