Mesa woman raising awareness of one-in-a-million disease - East Valley Tribune: Mesa

Mesa woman raising awareness of one-in-a-million disease

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Posted: Tuesday, May 13, 2014 7:45 am

All Heather Wood could do as her mother’s health and mental faculties deteriorated in the span of four months is provide as much comfort as possible and watch a life fade away swiftly.

The worst of it began just shy of 12 months ago with a phone call during a trip to Vegas, although the little signs that things were slipping for the Mesa resident’s mom began to pop up before then. Wood’s mom, Carol Loftin, started having blurred vision as well as that annoying headache people get right behind the eyes, but the St. Luke’s Medical Center nurse opted to work through the pain instead.

“A lot of people who work in the medical field are stubborn, and my mother was very, very stubborn,” she said.

It’s always best to get checked out when those issues arise, yet even a proper diagnosis early wouldn’t have saved Loftin’s life. There’s no such thing as too late when it comes to Cruetzfeldt-Jakob disease; just having it is as close to a guaranteed death sentence as one can get, and the process starts and ends in the course of a few months.

Properly pronounced KROITS-felt YAH-kobe, Cruetzfeldt-Jakob disease is a disease that is akin to dementia in how it erodes the mind and has accompanying symptoms like memory loss, anxiety, depression and the blurred vision Loftin sustained, according to the Mayo Clinic. Because of how much it resembles other mental disorders, Cruetzfeldt-Jakob disease is difficult to diagnose, so difficult that Dr. William Burke said the only way to detect it is through an autopsy.

Also exacerbating the issue is the disease’s rarity; approximately 300 people are diagnosed with Cruetzfeldt-Jakob disease every year, making it a literal one in a million circumstance. Burke himself has only seen three cases in 27 years.

“Most doctors will go through their whole career without seeing it,” he said.

The final question is how the disease is contracted, and the answer to that from Burke and medical authorities like the Mayo Clinic and the National Institutes of Health remains theoretical at best. An estimated 5 to 10 percent is spread genetically, but the main theory offered by the NIH and Burke is tied to prion proteins that are harmless in their natural form but can cause problems when infected, in this case neuron loss and other forms of brain damage, according to the NIH.

Burke offered an additional theory linked to Kuru disease, which the NIH states was an epidemic that struck the Fore of the highlands in New Guinea in the 1950s and ’60s. That disease was linked to the consumption of human brains — the Fore practiced ritualistic cannibalism — and the disease has declined to almost full eradication.

Outlining the confusion and ambiguity tied to Cruetzfeldt-Jakob disease is necessary ahead of detailing the experience, as the disease’s messiness made Wood’s experience harrowing and frustrating. Wood and her husband spent three hours in Las Vegas in late May 2013 before receiving the call about her mother’s hospitalization, which served as the official start to their labyrinthine experience.

Loftin’s hospital visit featured a slew of exams and tests offering no indication that anything was wrong with her. Blood tests offered nothing, and a series of options like dementia and other diseases and disorders were offered up as potential causes.

But Loftin’s health continued to decline as the doctors spent a month and a half trying to pinpoint the exact cause of her ailments until one doctor suggested Cruetzeldt-Jakob as a lethal possibility.

“I felt like I was kicked in the stomach. My heart dropped,” she said.

The length of the diagnosis was a cruel twist for Wood, as she said she would have taken her mother on that one last trip, the one last memorable moment had she known earlier. Too much time had passed though, and her mother was already losing her memory and the ability to move on her own, making the last ride an impossible dream.

What happened instead were a couple months of decay for Loftin until her inevitable death in August. Blake said on average it takes a year for a person with Cruetzeldt-Jakob to die; Wood and her family received four months of incremental loss. Wood said the experience comes down to losing a loved one before he or she physically departs.

“When you find out you’re loved one has this disease it’s life changing. I’m not the same person that I was a year ago,” she said.

Wood has devoted energy and effort toward increasing people’s knowledge of Cruetzeldt-Jakob disease, which she said receives little attention or fundraising because of its rarity. She started a Facebook page in her mother’s memory — www.facebook.com/pages/CJD-fundraiser-in-honor-of-Carol-Loftin/371256349682371 — and is working to raise $10,000 to earn a matching grant for research purposes. The fundraiser ends on Aug. 13, which is also the one-year anniversary of her mother’s death.

“I want to give Cruetzfeldt-Jakob disease a face … I want people to know what this disease is,” she said.

Additional information about Cruetzfeldt-Jakob disease is available by visiting the NIH and Mayo Clinic websites, as well as www.cjdfoundation.org.

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