Columbian Newspaper

Finding answers for patients with rarest of rare diseases
Author: LAURAN NEERGAARD, Associated Press

WASHINGTON — The youngster’s mysterious symptoms stumped every expert his parents consulted: No diagnosis explained why he couldn’t sit up on his own, or why he’d frequently choke, or his neurologic and intestinal abnormalities.

Then they turned to a new national network that aims to diagnose the rarest of rare diseases — and learned Will Kilquist is the only person known in the world, so far, to harbor one particular genetic mutation that triggered all those health problems.

“It kind of put me at peace with myself, knowing there is absolutely nothing I could have done to prevent this,” said Kari Kilquist of Murphysboro, Ill., Will’s mother.

The Undiagnosed Diseases Network , set up by the National Institutes of Health, turns scientists into detectives to attack medicine’s cold cases — the patients left in diagnostic limbo because their symptoms didn’t match any known diseases. The idea: Offer them access to cutting-edge research, at no cost, in hopes that uncovering unique ailments would improve overall medical knowledge.

Wednesday, the network published a snapshot of its findings that highlight the desperate demand for help.

More than 1,500 people applied for an evaluation between 2015 and 2017 at the network’s initial seven patient sites. Just 601 in that first group were accepted, those deemed most likely to benefit, researchers reported in the New England Journal of Medicine.

Scientists came up with a diagnosis for about a third, 132 of the first 382 patients to complete their evaluations. And 31 of those diagnoses were never-before-known syndromes, according to the report.

Scientists hope to improve that diagnosis rate as more patients enter the program. Already, the application number has nearly doubled and more mysteries have been solved. Last month, the NIH added five more hospitals to the network.

Even those who didn’t get a diagnosis at first “say we have hope just knowing there are people looking at our case still and we’re not forgotten,” said Dr. Euan Ashley of Stanford University, one of the network sites.

Diagnosis doesn’t mean doctors automatically know how to help. One in 5 had a specific therapy recommended. Ashley said other families were able to cancel expensive follow-up testing; he calculated the network approach could cut tens of thousands of dollars from the typical patient’s diagnostic odyssey.

Remember last year’s deadly flu season? Well, there’s some good news
Author: Andy Marso, The Kansas City Star

Flu season could start within weeks, and though early indicators suggest it could be relatively mild this year, health officials are renewing calls for vaccination following one of the deadliest seasons in recent memory.

Last year’s flu season began in late October, peaked in February and didn’t fully cool until May, breaking national records for hospitalization rates along the way.

There’s reason for optimism that this year’s season won’t be as bad.

Globally, the flu season starts in Australia. Its impact there can predict how bad it will be here and how well the annual flu vaccine works against the most prevalent strains.

Last year, Australia’s flu season was nasty.

This year, things have been much more mild Down Under, according to a report released recently by AARP that quoted national and international health experts.

“It’s quite a contrast from last year, when we had a very severe flu season, with H3N2 predominating,” Kanta Subbarao, director of the World Health Organization Collaborating Center for Reference and Research on Influenza, said in the report.

Health officials still say vaccination is key.

The Australia season is an imperfect predictor because the flu virus can shift and mutate, said Kerri Tesreau with the Missouri Department of Health and Senior Services.

“It does appear the flu season has been mild in Australia and the predominant strain has been H1N1 and the flu shot works well against that,” said Tesreau, the director of the department’s Division of Community & Public Health. “But flu is unpredictable.”

Missouri health officials noted that the flu costs 17 million workdays every year in the United States.

Farah Ahmed, state epidemiologist for the Kansas Department of Health and Environment, said her state is also beginning its vaccination push. The Centers for Disease Control recommends that almost everyone 6 months or older get the shot by the end of October.

Ahmed said it’s particularly important for anyone at high risk of complications, including babies and young children, pregnant women, older people and those with certain chronic conditions. It also potentially prevents people who care for those populations from spreading it.

Letter: Herrera Beutler is undeserving
Author: Dylan Normington, Vancouver

Many letters claim that Rep. Jaime Herrera Beutler is “working for us.” She voted 40 times to allow insurance companies to discriminate against us based on our medical histories. She voted 40 times to take away our right to have insurance coverage for pre-existing conditions. How is taking away our rights and losing coverage for pre-existing conditions “working for us”?

Carolyn Long will protect our rights and keep our insurance coverage for pre-existing conditions. Vote for Long!


Letter: Consider the farmers
Author: Tom Carney, Vancouver

In the debate between Sen. Maria Cantwell and challenger Susan Hutchison, I laughed when Hutchison said that farmers will take “short-term pain for long-term gain.” One can tell this is a statement by someone who has never tried to sell a product to Asian countries; it’s next to impossible. It is only through the hard work of these farmers and their representatives that the agriculture exports grew in the post-World War II era. Now, in their absence, their customers are being approached by others, and a lot of their clients will never come back. Luckily, they have tax dollars collected from you and me to bail them out. As a side note, Hutchison was once active in Young Life, a Christian organization that espouses behavior that is essentially the opposite of today’s Republican leadership, both at the state and federal levels.


Letter: Holt is in good company
Author: David Nierenberg, Camas

I agree with The Columbian’s endorsement of Eric Holt for county council chair. In our community of less than half a million, most issues shouldn’t be political — parks, pets, prisons and public safety shouldn’t be partisan. But Holt’s opponent refuses to repudiate the negative legacy of the last board of county commissioners, which brought nasty politics into our community. We’re defined by the company we keep. Eileen Quiring stubbornly keeps the wrong company. Our entire nation is more divided today than it’s been in half a century. Let’s not bring such divisiveness back here. Vote Eric Holt for chair. Let’s work together to make a great place better.








Portland Business News

Why Oregon's natural resources jobs will thrive well into the future (Charts)
Author: Brandon Sawyer
Oregon's bountiful farms, ranches, forests and fisheries have sustained the state from its origin and will continue to provide substantial revenue as well as a steady source of jobs into the future. As a whole, occupations attached to farming, fishing and forestry are projected to increase 11.3 percent between 2017 and 2027 to a total of 51,285, according to the Oregon Employment Department. That's slightly below the projected increase for all Oregon occupations of 12 percent, but several occupations…
Grand Central Bakery's NW expansion takes shape in Seattle
Author: Coral Garnick
Shake Shack and Macrina Bakery are open and the new Grand Central Bakery and Daniel's Broiler are not far off.

Portland Tribune

Monday sports events
Author: Portland Tribune
The Portland Tribune's comprehensive breakdown of games and happenings for Oct. 15

Monday, Oct. 15

Prep boys soccer

Wilsonville at Parkrose, Horizon Christian at Columbia Christian, 4:30 p.m. … Jesuit at Southridge, La Salle Prep at St. Helens, 7 p.m.

Prep girls soccer

Catlin Gabel at Riverdale (Lewis & Clark), 4:30 ...

Monday TV, radio
Author: Portland Tribune
The Portland Tribune's comprehensive breakdown of games and happenings on the air locally on Oct. 15

Monday, Oct. 15


San Francisco at Green Bay, 5:15 p.m., ESPN, KXTG (750 AM, 102.9 FM)


Milwaukee at L.A. Dodgers, Game 3, 4:30 p.m., FS1, KMTT (910 AM)

Men's soccer

Iceland vs. Switzerland, ...

Monday sports events
Author: Portland Tribune
The Portland Tribune's comprehensive breakdown of games and happenings for Oct. 15

Monday, Oct. 15

Prep boys soccer

Wilsonville at Parkrose, Horizon Christian at Columbia Christian, 4:30 p.m. … Jesuit at Southridge, La Salle Prep at St. Helens, 7 p.m.

Prep girls soccer

Catlin Gabel at Riverdale (Lewis & Clark), 4:30 ...