A Family's Curse | News
Atanta, GA - A North Georgia Family is one of the few in the world that lives with terrible odds. Half of them will get Alzheimer's Disease.
"We just love each other."
It is a tender moment between 76 year old Mildred Lowman and her 9 month old grandson Elijah, caught on home video. The two of them are nestled together on the couch. But Mildred doesn't know Elijah is her grandson. She thinks he is her baby.
"I watched her and my son switch places." 41 year old Holly Phillips took care of her mother as she deteriorated from Alzheimer's disease. Phillips and her two sisters bore the burden of care until the very end, happy they were able to keep her at home until she died two years ago. Her loss is felt at every family get together. So are the losses of four of Mildred's siblings, who also had Alzheimer's disease. But the losses for the entire family are too many to count.
"I knew right away there was something very different about this family." Dr. Allan Levey treated the first person from their family a decade ago.
"The first person I saw in this family was over ten years ago now. She told me about her father and an earlier generation, one generation where 10 or 11 individuals were affected, way more than the typical odds."
When sisters Sherry, Louise, and Holly brought their mother to Emory for treatment, they received a surprising welcome.
Sherry Dunn says, "The Emory guys were like, 'Wow, we've been looking for ya'll for so long.' And we were just in shock because we thought 'Okay, what are they talking about here?'
Emory staffers connected branches of this family that didn't know each other, making the same disturbing findings.
Emory Genetic Counselor Ami Rosen says, "About 50 percent of the people in their family have Alzheimer's Disease. So instead of saying my grandmother has it, it's my grandmother, four of my aunts and two of my uncles and my mother and two of my brothers have it."
The sisters, along with a hundred family members, became part of an Emory study, serving as a living lab for a group of dedicated researchers who are trying to learn why their family is so afflicted by this disease. Emory researchers attend family reunions, drawing blood, doing exams, eating home cooked food.
Doctor Levey says, "I do feel like a part of their family. They're absolutely wonderful people. They're incredibly courageous. They've overcome a lot of fears. They've given of themselves enormously, more than we can ask."
This amazing access has produced critical information. Most striking, to be in this family is to live with terrible odds.
Sherry Dunn says, "We have a 50/50 chance." A one in two chance of getting Alzheimer's Disease.
Holly Phillips says, "That fear is there, that Alzheimer's is lurking, waiting, just who are you going to hit next?"
Louise Lee says, "I look at my brothers and sisters and think well, if I don't get it, one of them might."
As big as the family is, only about a third are in the study. It's a controversial choice.
Lee says, "It is a divider. If that subject comes up, it is a divider. Some just don't want to talk about. They don't want anything to do with it."
Doctor Levey says, "You know this family is riddled with fear." With good reason. This long painful goodbye ends the same for every victim. There is no cure. No way to stop it. Research is this family's only hope.
"We take the blood and extract dna and look at their genetic material." Neurologist Doctor Thomas Wingo is one of the lead researchers. "The hope is what they share may be what's responsible for developing alzheimer's disease in the family."
There are only a handful of families in the world like this one. And in each case researchers found an extra gene that caused the Alzheimer's. That's the goal at Emory.
T Levey says, "So we expect, if we can discover the gene that causes alzheimer's disease in the family, it will give us really imortant insights into another cause, a direct cause of alzheimer's disease in this family."
If reseachers find the gene, every family member could get a test and know their fate.
"I don't want to know because if they don't have a cure for it right now i still have hope at this point that I'm not going to have it."
And finding a gene is a step closer to a cure. For now, every moment of forgetfulness, isn't.
Family member and study participant Wayne Bagwell says, "When you lose your car keys you go oh God is it Alzheimers?"
Cousin Regina Morgan says, "If I suddenly forget something it just scares me to death."
With the older generation gone, the younger ones left are waiting, wondering if it will be them, wondering how much time they have left.
The wheels of science turn slowly. Emory Researchers hope to have more answers for this family in a few years. Louise Lee has to believe there's a reason for the generations of suffering and loss.
"I think the lord knew that we would do whatever we needed to do to help find an answer."