Archive for the ‘Massachusetts General Hospital’ Category

Northport Crohn’s & Colitis Study Underway

Northport 2016 BWH/Harvard

Crohn’s & Colitis Study Underway

~ Still Recruiting Participants ~

 

Dr. Josh Korzenik, The Director of the Crohn’s and Colitis Center at Brigham and Women’s Hospital (BWH), one of the leading IBD researchers in the country, and his team have begun their second study of the health cluster of ulcerative colitis and Crohn’s disease diagnosed in Northport residents.  Their 2011 study concluded diagnosed cases of ulcerative colitis or Crohn’s disease in the community was 10 to 15 times higher than national standards. This was one of the largest health clusters of these illnesses Dr. Korzenik  has ever seen.

The current study is a more in-depth epidemiological case-control study.  The focus is in finding a possible correlation of chronic exposure to specific heavy metals and ulcerative colitis and Crohn’s disease.

The case-control study includes participants who have been diagnosed with either Crohn’s or colitis as well as participants who have not been affected.  In March I asked for volunteers for this new study. The response I received was overwhelming. I provided the full list to Dr. Korzenick, however if you volunteered and have still not heard from them please call or e-mail them at:  IBDresearch@bwh.harvard.edu  or  617-732-9173.

It is not too late to volunteer if you haven’t.  They are still recruiting participants.

The scope of this study, and the study itself, has the very likely possibility of providing groundbreaking information the scientific community is greatly lacking.

Thank you to the many past and present Northport residents who have volunteered to participate in this study.

We cannot change the past or the damage Teck’s pollution has caused, and continues to cause, to countless Northport residents. However, by participating in studies like this invaluable information on the routes and duration of exposure to specific environmental toxins have in triggering or causing these rare diseases.  This could help accomplish prevention, regulatory changes, and better treatment options and cures for Crohn’s disease, ulcerative colitis, and possibly many other autoimmune diseases.

–  Jamie Paparich

BWH/Harvard Northport IBD Study to begin next month

2016 BWH/Harvard Crohn’s & Ulcerative Colitis study to begin in November

In 2011  Dr. Josh Korzenik, The Director of the Crohn’s and Colitis Center at Brigham and Women’s Hospital (BWH), one of the leading IBD researchers in the country, and his team conducted a study of Northport residents through health questionnaires and medical record confirmations. He discovered a health cluster of Northport residents with either ulcerative colitis or Crohn’s disease that was 10 to 15 times higher than national standards. This was one of the largest health clusters of these illnesses he has ever seen.

The causes, and a cure, for ulcerative colitis and Crohn’s disease have long baffled the scientific community.  Northport’s historical exposure to specific heavy metal toxins may be a contributing factor to the abnormally high number of residents with ulcerative colitis and Crohn’s disease.

Dr. Korzenik is moving forward next month with a new epidemiological case-control study of Northport residents; focusing on a possible correlation to chronic exposure to heavy metals triggering ulcerative colitis and Crohn’s disease.

In March I asked for volunteers for this new study. Participants needed are residents diagnosed with either Crohn’s or Colitis, as well as residents who do not have either of these illnesses (a control group).  I received many volunteers to participate.  Thank you!   However, I do not want to miss anyone who may want to participate in this ground breaking study.

If you have not already contacted me* to volunteer and you are willing to participate in this study, both diagnosed residents and non diagnosed residents, please e-mail me as soon as possible.  The study begins in the next two weeks.  

Contact Info:  jamie_paparich@hotmail.com   or  northportproject@hotmail.com

* If you are not sure if you contacted me already please feel free to e-mail again!

The study is simple, and will take only a few minutes of your time.  You will be contacted by the research team, either by telephone or e-mail depending on your preference, to give your consent to participate in the study.  A questionnaire and a kit including scissors and nail clippers to obtain hair and nail samples will be sent to your home.  You will then send the packet back to the researchers, and the assays will be done at their lab.

Thank you so much to the community for your amazing support in volunteering for this much needed study!

 

Contact Info:  jamie_paparich@hotmail.com   or  northportproject@hotmail.com

1992 Northport WA Article on town’s “death list” & link to Teck Smelter

Spokane Chronicle – May 27, 1992

“Canadian Companies Suspected in Illness”

Read this archived article at:

http://news.google.com/newspapers?nid=kxd3qP2_5uAC&dat=19920527&printsec=frontpage&hl=en (pages 7 & 8 or B1 & B2)

The last paragraph in the story is a quote from my Grandma, regarding all the illnesses found in Northport residents, specifically the children;

“It’s too late for my children because they’ve already got these problems,” she (Kay Paparich) said. “But what about the little ones coming up?”

This article, and her quote, was published 19 years ago.

Over 15 Northport children have since been diagnosed with Ulcerative Colitis or Crohn’s.

Another 17 children have been diagnosed with one of the other illnesses found in clusters throughout the community, spanning 3 generations of residents.

In this same article another Northport residents is quoted as saying;“This is my death list”.

She is referring to the list of 45 Northport residents who had passed away from cancer.
The current Human Health Risk Assessment being done by the EPA, regarding the health impacts the millions of tons of toxins Teck Smelter dumped into the air and Columbia River for over a Century, Northport, (located 3 miles downriver from the Canadian smelter), will not be looked at further as the EPA states their past research has shown no link to the chronic exposure to the smelters heavy metal toxins and the reported illnesses in the town.

Northport’s population has been stable at 350 since 1925. Currently we have identified 6 health clusters spanning three generations of Northport residents.

This is the largest amount of separate, non-infectious, health clusters ever found in the United States.

The EPA and the DOH still claim that: “there is no public health hazard for people living in the area…. if (their outdoor exposure is) up to 35 days in a year.”

I guess the good people of Northport Washington just have to hold their breath the other 330 days of the year….oh and hide inside their homes (preferably in a cellar if available).

CBC Radio – Interview with Paparich; “One American Woman’s fight against a Canadian Mining Company”

“One American Woman’s fight against a Canadian Mining Company”

Reported by Bob Keating, CBC Radio

Bill:     We’ll hear about one American woman’s fight against a Canadian mining company.

Bill:     Some people just dig in and refuse to let go. We’re going to meet someone like that this morning. Bob Keating has a feature report about a woman from Washington State and her pointed questions to a Canadian mining company.
Intro: And now the story of a woman who just refuses to give up.

JAMIE PAPARICH’S family is from tiny Northport, Washington. Northport is just across the American border – about 25 kilometers from a lead- zinc smelter run by Teck Resources in Trail.  Paparich is convinced the smelter and what it discharges into the air and water is making the people of Northport sick.  And so she’s been on a campaign to get an official study done of Northport residents.

And as Bob Keating tells us in this feature report – it seems to have worked.

IN: Jamie Paparich
RUNS: 4:4
OUT: CBC, News Northport Washington

JAMIE(audio):    My Grandma has Parkinsons, my grandpa died of leukemia, one of my aunts died of.. …(fade under)

BOB KEATING:   Jamie Paparich says she sees sickness in her own family.
The Paparich farm is on the Columbia River – in tiny Northport, Washington.
10 – kilometres from the border, downstream and downwind from Teck Metals smelter in Trail.
A smelter that discharged lead, mercury, cadmium and other compounds into the air and water for decades.
Paparich is convinced there is a link.

JAMIE: The pattern is just undeniable. Something is making these people sick.

BOB:     And so Paparich began doing research.
Asking Teck for air and river quality reports, the American
departments of health and ecology for studies they had done. Anything she could get her hands on.

JAMIE:  From that moment on I became obsessed. I poured over every report I could find.

BOB:     Paparich says she uncovered anecdotal evidence that people in Northport have high incidence of diseases such as crohn’s and
colitis, thyroid problems and certain cancers. But it was only anecdotal.
So she decided to do her own questionnaire.

(AUDIO)…….Typing.

Using the internet and Facebook she tracked down three generations of Northport residents.
And she asked them personal questions about their health.

JAMIE:   It was hard to get people to talk about it. Because they are modest and they don’t want to complain. Then when they are telling me I am thinking, this is horrible.

BOB:     Paparich got over 300 responses back.
She says the illnesses reported mirror what she sees in her own
family.

JAMIE:   My God this is not Okay! Y’know my grandpa let them on his land. He shook their hand said come on it, can I help you? What do you need? In the end they looked him in the eye and said you should be fine. He died of Leukemia. To me that is not okay.

BOB:     Paparich’s ‘unofficial’ survey was published in a local community health newsletter.
And began getting attention.

JOE WICKMAN is with the Northport environmental group Citizens for a Clean Columbia.

JOE:     I don’t think anybody realized how widespread it was. You just hear anecdotally somebody has this and somebody else has it. You just think…’that’s kind of weird’. You look at this and it’s kind of scary.

BOB:     Now the Paparich’s survey has got the attention of medical researchers at the other end of the country.
A team from Massachusetts General Hospital wants to hear more. Because of Jamie Paparich they are going to do their own study of Northport and the prevalence of diseases such as Crohn’s and Colitis.

DR. MINDY SMITH helped Paparich with her questionnaire and says that is exactly what they hoped would happen.

MINDY:   I think what already happened is what we hoped. We hope it would draw attention from epidemiologists. They’d be interested in doing the kinds of studies that would help discover the links between the chemicals and illness and get bench researchers looking at triggers and potentially treatments.

(AUDIO) ………Walking sounds………This until you can see gravel at the far end was a pile of slag. MATT WOLLOHAN walks along ‘Black sand Beach’ in Northport.

BOB:     It got that name because this stretch of beach on the Columbia River used to be deep black.
But it wasn’t sand at all, it was slag that drifted downstream from the Teck smelter.

MATT:   And when we first moved here we thought it was unique to have a black sand beach. We had no idea we were looking at a giant pile of slag.

BOB:     That slag is now gone – replaced by brand new sand.
Teck spent a couple million dollars cleaning up this beach.
To Wollohan it was a goodwill gesture to the people of Northport by the mining giant next door.
Wollohan says Teck is becoming a better neighbour.

MATT:    Yeah, I think they are. I think they see value to improving the area. The quality of life has improved cause they cleaned up their act. And I think if things keep moving in that direction it can’t become anything but a better place to live.

BOB:     Wollohan also has health issues – and took park in the health questionnaire.

(AUDIO)…..typing

Teck does not want to talk about Jamie Paparich and her unofficial study.
In an email to CBC the Manager of Energy and Public Affairs Richard Deane says there have been several studies done on air and water quality in Northport, Washington
Deane says no link has ever been found between the smelter and diseases such as Crohn’s and Colitis.

 

Yet Jamie Paparich works on.
Asking people in Northport personal questions.
Fully believing there is a link between her Canadian neighbour – and sickness people keep telling her about.

JAMIE:   It’s presumptuous of me to say, and I’m not a doctor but from what I’ve read. From how many people in small town have such similar things, I do 100 percent believe it.

BOB:     In Northport Washington, I’m Bob Keating for CBC radio.

Northport, WA IBD Study – Article in the CCC’s July Newsletter

CCC Newsletter 7/2011 - Northport IBD Study Article

 

Northport WA Colitis/Crohn’s Study – Focus on Smelter Pollution – Spokesman Examiner (Feb 2011)

Study tracks reasons behind high rate of illness near Northport

Focus is area downstream from B.C. smelter

Dan Pelle photo

Gail Leaden was diagnosed with ulcerative colitis, as was her friend on the right in the photograph. Both women used to live in Northport, Wash. Some suspect that emissions from a Trail, B.C., smelter contributed to their health problems.

Becky Kramer The Spokesman-Review

February 6, 2011 – Updated: February 13, 5:24 p.m.

Gail Leaden was 5 when she was diagnosed with ulcerative colitis. In high school, Leaden’s best friend in the small town of Northport, Wash., was diagnosed with the same illness.

She always found the coincidence odd.

“It’s not a common disease to begin with,” said Leaden, 25, who now lives in Spokane. “How ironic that my best friend gets it.”

More than 50 residents or former residents of Northport say they’ve been diagnosed with ulcerative colitis or Crohn’s disease, two types of inflammatory bowel disease. Some suspect that their health problems are tied to decades of industrial emissions from a smelter in Trail, B.C. An upcoming study may eventually provide answers.

Two doctors from Boston’s Massachusetts General Hospital are looking into reports of high rates of bowel disease in Northport, a town of 330 near the Canadian border. In the general population, about 4 people per thousand are diagnosed with Crohn’s or colitis.

“We should be expecting to see one or two cases for a town the size of Northport,” said Dr. Sharyle Fowler, who will be working on the study.

The disease cluster, if it can be confirmed, could shed light on triggers for Crohn’s disease and ulcerative colitis, said Dr. Josh Korzenik, director of Massachusetts General’s Crohn’s and Colitis Center. No one knows what causes the diseases, which affect 1.5 million Americans, but both appear to have genetic and environmental contributors.

“We were drawn to this because it’s an unusual cluster, or potential cluster, in a small population,” Korzenik said. “It offers us both a potential opportunity to help the people of Northport, as well as a much broader group of people, by understanding some of the environmental components that may lead to these diseases.”

Rates of Crohn’s disease and colitis are on the upswing in industrialized countries. People with the disease often have persistent abdominal pain and diarrhea. Surgery is sometimes required.

The doctors’ first step is to determine whether they can confirm anecdotal reports of a disease cluster. They’ll send out health questionnaires to current and past Northport residents. They’ll also ask people’s permission to review medical records.

“If there is an increased risk of these diseases in Northport, this may be the first step of a longer pursuit of trying to understand why,” Korzenik said.

Future studies could look at pollution exposure to see if it correlates to illness rates, he said. Or, the studies might investigate whether Northport has an unusual, but genetically explained cluster, he added.

That type of testing would require research funding. At this point, Korzenik said, the health questionnaire is a “sweat equity” effort by the two doctors, who were intrigued by health histories collected by local volunteers. About 320 current and former Northport residents provided health information. Thirty-six said they had ulcerative colitis; 18 said they had Crohn’s disease.

Smelter stopped dumping slag in ’95

Jamie Paparich suspects a link to the smelter. Her grandparents raised six children on a farm outside of Northport, about 15 miles downwind and downstream of the smelter owned by Teck Resources Ltd. For decades, the century-old smelter released tons of pollution daily into the air and the Columbia River, including mercury and other heavy metals.

The Washington Department of Health put an air monitoring station on the Paparich property. Through the 1990s, it recorded elevated levels of arsenic and cadmium, said Paparich, who lives in Nevada.

Both her dad and her aunt, who grew up on the farm, were diagnosed with ulcerative colitis. They ate vegetables from the family’s garden and swam in the Columbia River. As the disease progressed, both siblings had their colons removed.

Two neighboring families also had children with colitis and Crohn’s disease, said Rose Kalamarides, Paparich’s 54-year-old aunt.

The families “weren’t related by any stretch, yet we all had these same problems,” said Kalamarides, who now lives in Anchorage, Alaska.

In the early 1990s, the state Department of Health found significantly higher rates of hospitalization for inflammatory bowel disease in Stevens County and adjacent counties compared with the rest of the state.

A few years later, the federal Agency for Toxic Substances and Disease Registry prepared a Northport public health assessment. Results were inconclusive, but the study generally found that pollution didn’t reach concentrations known to cause health problems.

“Our understanding is that these studies have not linked the elevated incidence of inflammatory bowel diseases … with any specific causes,” said Richard Deane, Teck’s manager of energy and public affairs.

Another study done in Trail, B.C., didn’t find higher hospitalization rates for bowel disease compared with the rest of the region. That study was done in 1994 for the B.C. Ministry of Health.

Deane said the smelter has cleaned up its act. In 1995, the smelter stopped dumping slag, a byproduct of the smelting process, into the Columbia River. Slag contains 25 compounds, including heavy metals. The smelter also halted production of phosphate fertilizer, reducing mercury releases into the river.

Heavy metals releases into the air and water have dropped by 95 percent as Teck has invested in upgrading the smelter, Deane said. Through an agreement with the U.S. Environmental Protection Agency, Teck also is paying for a multiyear study of pollution in the upper Columbia. The studies will look at current contaminant levels and whether they pose threats to people or wildlife.

“Those studies will cover Northport,” Deane said.

‘Something’s not right’

Northport residents, however, have long lobbied for epidemiology studies, which would take a closer look at disease rates.

Paparich got active in the effort three years ago, after stumbling across the air monitoring results for her grandparents’ farm. She contacted the national Crohn’s and Colitis Foundation last year, which put her in touch with Korzenik and Fowler.

She hopes that Northport can lead researchers closer to detecting the illnesses’ cause. Bowel disease is “an embarrassing, hard, painful illness,” Paparich said. “It really affects people’s quality of life.”

Said Kalamarides, Paparich’s aunt, “I’m curious whether anyone can really establish what happened.”

Though Kalamarides lives in Alaska, she returns to Northport frequently to visit her mother. She admits to feeling some trepidation about the controversy the study could unleash in Northport, which has close ties to Trail.

“Trail is a company town. A lot of people get real defensive because it could affect their livelihood,” Kalamarides said. “Even those of us who experienced the illness – I use a catheter to use the bathroom – are sensitive about it.”

Northport resident Barb Anderson thinks the community needs answers.

“I was counting up all the people I know with Crohn’s disease and colitis just the other day,” she said. “I came up with 15 people.”

The list includes her daughter, Kelsey Anderson, a graduate student in Seattle. Kelsey – Gail Leaden’s friend – was diagnosed with ulcerative colitis during her junior year of high school. At Rockwood Clinic in Spokane, where the diagnosis was made, doctors were surprised that two of Kelsey’s classmates had the same illness, said Barb Anderson. Leaden also remains troubled by the coincidence. It makes her suspect “that something’s not right.”

“I hope they can find an answer,” she said. “Was there a cause behind it, or was it a fluke?”

Four commentsAdd comment

  • rosehips at 7:39 a.m. Feb 6:

    Will Northport finally get answers we’ve been asking for years? Let’s hope so. There is a reason for this cluster and the people of Northport deserve to know why, even if it will be uncomfortable for relations with the Trail community. Let’s hope that the people of Northport will support this effort to find out what is making people sick. Shouldn’t we know the truth so we can know the risks?

    Great job Jamie Paparich for making this study happen!

  • greenlibertarian at 12:48 p.m. Feb 6:

    I remember being aghast when I first saw those slag piles on the Columbia River, had no idea, was just sight-seeing on a road trip to Canada back in the early 90’s and that gruesome sight as well as the belching stinking Cominco plant just blew me away. Disgusting. Have no doubt that’s the proximate cause of the health problems in that area.

  • oneanddone at 2:16 p.m. Feb 6:

    Hey SR Editors,
    How about establishing a process whereby anyone who is accurately reported for posting an ad or talking off topic immediately has their name and email blocked here to fore – such as marymoss6. Granted there are work arounds but it will be painful. No one wants these morons posting.

  • northportproject at 5:24 p.m. Feb 13:

    ATTN: Past & Present Northport Residents diagnosed with Ulcerative Colitis, Crohn’s
    Disease, Diverticulitis, Ileitis, or any otherInflammatory Bowel Disease (IBD)

    RE: Contact Information to Receive Survey for Epidemiological Study Conducted
    by Crohn’s & Colitis Foundation of America

    As mentioned in Becky Kramer’s excellent article; Dr. Josh Korzenik and Dr. Sharyle Folwer from Massachusetts General Hospital’s, in cooperation
    of the Crohn’s and Colitis Foundation of America, received the funding and approval to conduct
    an epidemiological study of Northport residents, both current and past, who have been
    diagnosed with ulcerative colitis, crohn’s, or any other IBD disease.

    This is a ground breaking study, which countless concerned groups and residents have spent
    decades fighting to get done. The results of this study can prevent future generations from the
    pain and suffering of the illnesses mentioned above, as well as finding better ways to treat, or
    even cure, them.

    All that is required from participants who are eligible for the study is to complete a simple online
    survey (or have the survey mailed to you).

    The survey includes questions that will assist them in discovering similarities of impacted
    residents, (such as age, diet, use of river, period of time exposed, as well as family health history
    and lifestyle, etc.)

    All information provided will be confidential and seen only by Dr. Fowler and Dr. Korzenik. You
    may be contacted for your medical record regarding the diagnosis and treatment of the colitis
    (crohn’s, etc.). If you do not have these records, or are unable to locate them, they will do the
    legwork for you based on details you can provide (city, state, year diagnosed).

    Eligible Participants:
    Anyone who does, or did, live in or near Northport, WA, for any length of time, and have been
    diagnosed with Ulcerative Colitis, Crohn’s Disease, Diverticulitis, Iileitis, or any other IBD.

    Contact Information Needed from Participants – ASAP**
    Please send either your e-mail or home address, (depending on where you would like to receive
    the survey), to northportproject@hotmail.com or paparichj@live.com

    If you are unable to send it via e-mail please mail your address to: J.Paparich 5013 Snowy Mtn.
    Drive Winnemucca, NV 89445 or call me at 775.750.6384.
    This information is needed as soon as possible.

    Please pass this information on to anyone you know who may be eligible for this study. If you
    have a deceased family member who suffered from any of the illnesses please complete a
    study for them.

    It will only take a few minutes of your time to complete this survey that could help countless
    people from the pain and suffering you have had to endure.
    Do not hesitate to contact me with any questions or concerns at 775.750.6384 or
    paparichj@live.com

    For more information on the Northport Project go to: www.northportproject.wordpress.com
    Thank you so much for your participation!
    Jamie Paparich

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