Posts Tagged ‘Inflammatory Bowel Disease (IBD)’

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

Linking Air Pollution to Colitis & Crohn’s

Linking Air Pollution to Ulcerative Colitis and Crohn’s Disease;                      

A statement for Northport residents, epidemiologists, research organizations and universities on an opportunity for an epidemiological case-control study on Crohn’s and Ulcerative Colitis that continues to be ignored

By Jamie Paparich

Extensive studies continue to be done on human health issues linked to exposure to air pollution. It is well documented that exposure to air pollution has been a contributing factor in multiple forms of lung and heart diseases.

However, almost no studies have been done on the effects of air pollution on the gastrointestinal tract, specifically the intestines. Even though the bodies intestines absorb the majority of the toxins inhaled and ingested from air pollution.

Crohn’s Disease and Ulcerative Colitis are the two known inflammatory bowel diseases (IBD). Crohn’s disease can cause inflammation throughout the entire GI tract, anywhere from the mouth to the anus. It most commonly effects the small intestines, causing chronic inflammation of the lining of the small intestines.  Ulcerative colitis impacts the large intestine/colon.  Colitis causes inflammation and open sores, or ulcers on the lining of the large intestine/colon. Both Crohn’s and Colitis causes severe abdominal discomfort and frequent emptying of the colon. These diseases are incurable and impacts not only the patients long term health, but also their quality of life. The scientific and medical community have been unable to discover what causes these rare diseases, which limits the treatment options.

AIR POLLUTION

Depending on where you are, air pollution can contain anything from fire smoke, ash, emissions from smelters, mining operations, power plants, construction sites, road construction, and automobiles…just to name a few. All air pollution contains particulate matter (PM). Particulate matter is liquid and solid particles suspended in the air that contains a mixture of the toxic pollution, the dust and pollen in your air.  The particulate matter is how the toxins from pollution enter the body. 

Exposure

Inhalation & Dermal:

There are two sizes of particulate matter.

– PM 10:  10 microns (a millionth of a meter) in diameter or less. These are small enough to be inhaled and accumulate in the respiratory system. Many of the particles pass from the respiratory system through mucus down the GI Tract.

– PM 2.5:  2.5 microns in diameter (1/10,000 of an inch). These are so small they are inhaled into the respiratory system, but then are able to pass through the lungs into the bloodstream, and also from the respiratory tract through the GI Tract. These size particles can also be absorbed through the skin.

Ingestion:

The particulate matter falls onto gardens, crops, the food animals ingest, water sources, and the water ways fish inhabit. In turn, we ingest the PM through those products when consumed.

NORTHPORT AIR POLLUTION

In the case of Northport, air monitoring has shown that our air contains dangerous levels (way above safety standards) of arsenic and cadmium.  This is from the emissions released from the smoke stack at Teck Resource, a Canadian smelter located 3 miles upriver. The particulate matter in our pollution contains several heavy metals, not just arsenic and cadmium, because of the smelters emissions. 

BODIES REACTION

Gastrointestinal Tract

    • Inhalation:  Once particulate matter is inhaled into the respiratory tract, it is sent through the GI tract through mucocilliary clearance, eventually entering the intestines.  The majority of the  particulate matter inhaled into the body will end up in the intestines.  Not all of these toxins are expelled from the body. Many are absorbed and accumulate into the intestinal walls. This induces systemic effects; directly effecting the epithelial cells (the barrier between toxic invaders and healthy cells lining the intestine). System inflammation then triggers immune activation.  Over time, this leads to the immune system turning on the bodies good cells as well.
    • Ingestion:  Food and water containing PM toxins are ingested into the stomach, then passed to the intestines, where the toxins will, once again, spend the longest amount of time in the body, before being expelled from the body. The toxins not expelled will also inducing systemic effects, system inflammation, and eventually immune over stimulation.

IMMUNE SYSTEM & BIO-TOXICITY

Particulate matter alters the body’s immune system reaction. The immune system discovers and destroys disease causing organisms, viruses, and foreign agents in our bodies. The immune system kicks into overdrive due to the ingestion and inhalation of particulate matter, especially containing heavy metals. Eventually the chronic, overstimulation of the immune systems will cause chronic inflammation throughout the body, or to specific organs. 

Exposure to high levels of heavy metals is an obvious concern.  However, the more dangerous type of exposure is long term exposure, even to low levels.  This type of exposure causes the heavy metals to slowly accumulate in the bodies organs, causing biotoxic effects.  According to the research published in Heavy metal pollution and human biotoxic effects, (Duruibe, J. O. 1 *, Ogwuegbu, M. O. C. 2 and Egwurugwu, J. N. 3),  “….(G)eneral signs associated with biotoxicity of (sic) cadmium, lead, arsenic, mercury, zinc, copper and aluminum poisoning:  gastrointestinal (GI) disorders….”

INFLAMMATORY BOWEL DISEASE

In people with IBD, the immune system attacks the heavy metal toxins in the intestines.  Because of the accumulation of heavy metals toxins, from chronic exposure to specific air pollution, some individuals immune systems go haywire, attacking the toxins and healthy cells.  This eventually leads to chronic-inflammation, ulcerations, and thickening of the intestinal wall.  The result of this is Crohn’s disease or Ulcerative Colitis, and likely several other auto immune health issues.

However, not all people exposed to the same level of specific heavy metal toxins will develop Crohn’s or Colitis.  When the first cluster of Northport residents with either Ulcerative colitis or Crohn’s disease was discovered in 1992 statistically 1 in 100,000 people in the U.S. were diagnosed with one of these IBDs.  In 1992 Northport’s population was approximately 375 people, and 15 residents had been diagnosed with either Crohn’s or Colitis.  In 2012 a research team from Massachusetts General Hospital’s Crohn’s and Colitis Center conducted an IBD study of Northport and confirmed 17 people had either Crohn’s or Colitis, the population in 2012 was still around 375 people.  This is 11.5 to 15 times higher than the national standard. 

In 1992 and 2012’s study the residents diagnosed with either Crohn’s or Colitis lived within a two mile radius of each other, in the Columbia River Valley.  This valley was nicknamed “The Heavy Fallout Zone” by the EPA, due to the high levels of heavy metal toxins found in their sampling.  The levels were so elevated in this area because Teck’s air emissions, full of heavy metal toxins and sulfer dioxide, would flow north down the river and become trapped in the valley.  There is would settle, the particulate matter falling onto every surface below it, and being inhaled by the residents living on the little farms scattered along the banks of the river. These residents were chronically exposed to the dangerously high levels of arsenic and cadmium in the air for decades. 

However, the question still remains.  Why did some of these residents, living in the “heavy fallout zone”, contract Colitis or Crohn’s and some didn’t.  It impacted the children who grew up in the area the most, but not all of the children.  In the study; Exposure to ingested airborne pollutant particulate matter increases mucosal exposure to bacteria and induces early onset of inflammation in neonatal IL-10-deficient mice, (Salim SY1, Jovel J, Wine E, Kaplan GG, Vincent R, Thiesen A, Barkema HW, Madsen KL), the research team aimed to determine if exposure to particulate matter during the neonatal period and early-life would alter colitis in a mouse model.  The team concluded “Our data suggest that early exposure to pollution particulates can result in an earlier onset of intestinal disease in genetically susceptible hosts and can alter responses to gut injury in later life.”

Scientist have not been able to discover an inheritance/genetic pattern to IBDs.  Most scientists and researchers whose work is focused on Inflammatory Bowel Diseases and the GI Tract believe both genetic and environmental factors trigger the illnesses. 

Science Director of the Science and Environmental Health Network (SEHN) , Ted Schettler, M.D., M.P.H., shared his thoughts about the high occurrence of these diseases in our area; “If it is in anyway related to smelter emissions I’d wonder about changes in the intestinal micro biome as a plausible mechanism that could link metal exposure to inflammatory bowel disease.”

EPIDEMIOLOGY CASE-CONTROL STUDY

The community of Northport exceed all of the requirements to conduct an accurate epidemiological case-control study of the contribution chronic exposure to specific heavy metal toxins in air pollution has on triggering inflammatory bowel disease, as well as the impact it may specifically have on the immune system response.

The EPA is currently conducting a Human Health Risk Assessment of the area, as part of their agreement with Teck Resources in conducting remedial investigations and feasibility studies of the Upper Columbia River area and Northport. The EPA, nor Teck have any plans to monitor our air in any of the investigations or assessments.  The EPA has no interest in looking at the cluster of diagnosed cases of Crohn’s or Colitis in the area, spanning three generations. 

Today members of the community continue to be diagnosed with Crohn’s or Colitis, and more will continue to be diagnosed until something is done. 

Spokesman Article on Northport IBD Study Results

Researcher seeking clues behind clusters of disease in tiny town

High number of Northport residents have colitis or Crohn’s disease
Becky Kramer
The Spokesman-Review

Rose Kalamarides and her mother, Kay Paparich, talk last month about the high rate of Crohn’s disease and ulcerative colitis in Northport, Wash. Local residents suspect a link to pollution from a smelter in nearby Trail, B.C.

NORTHPORT, Wash. – Rose Kalamarides was in her early 20s when she was diagnosed with ulcerative colitis.    Her older brother also got the debilitating disease. So did one of her childhood friends, her third-grade teacher and a former classmate at her elementary school.

At the kitchen table of her mother’s home in Northport, Kalamarides noted a common thread in each diagnosis: People who got sick were from families who were downwind and downstream from a smelter in Trail, B.C., that funneled pollution through the narrow canyon of the Columbia River.

“When we were kids walking to school, we could smell it in the air,” said Kalamarides, now 56, who grew up about 15 miles from the smelter’s stacks.

The disease cluster in this tiny border town of 296 people has caught the attention of a Harvard Medical School researcher, who thinks it could provide clues for solving a medical mystery.

About 1.4 million people nationwide have ulcerative colitis or Crohn’s disease, a similar inflammatory bowel condition. The illnesses affect about one in every 200 people. Both diseases are believed to have environmental triggers, but despite extensive research the causes have never been identified.

Last year, 119 current and former Northport residents took part in a health survey designed by Dr. Josh Korzenik. Seventeen had confirmed cases of either ulcerative colitis or Crohn’s disease.

“That’s about 10 to 15 times what we’d expect to see in a population the size of Northport,” said Korzenik, director of the Crohn’s and Colitis Center at Brigham and Women’s Hospital, one of Harvard Medical School’s teaching hospitals. “I’m not aware of any other cluster like it.”

Researchers have long suspected that environmental toxins play a role in Crohn’s disease and colitis, which have symptoms including abdominal pain and diarrhea. Both illnesses emerged after the Industrial Revolution, when exposure to pollution from coal-fired factories and vehicle emissions became a part of many people’s daily lives.

Northport might help provide some answers.

Korzenik has ruled out a genetic influence in the town’s cluster: Few of the individuals were related. Seven of the 17 cases were people who lived along Mitchell Road, where sulfur dioxide emissions from the smelter killed farmers’ crops in the 1920s and 1930s, leading to an international lawsuit.

For a century, the smelter now owned by the Canadian mining company Teck Resources also dumped millions of tons of waste laden with heavy metals into the Columbia River.

Korzenik plans to expand the health survey to gather information from other communities near Northport. He’s also interested in pursuing funding to explore possible pollution exposures, including looking into whether the smelter’s emissions may have played a role in disease rates. An earlier study he worked on in England showed a mild correlation between rates of inflammatory bowel disease in young adults and certain types of air pollution.

“It’s important for the people of Northport to understand why this is happening – if there’s a particular exposure that’s leading to this extent of the disease in their community. It’s also important for the larger community,” Korzenik said. “Does this hold an important clue? … Then it may hold answers for many other people out there.”

Local residents say Korzenik’s initial findings confirm what they’ve long suspected: that rates of inflammatory bowel disease are uncommonly high in their small town.

“It’s a validation, but it’s a sad validation,” said Clifford Ward, a Northport resident who lives several miles from the smelter.

Two of his three children have had digestive tract problems, though neither has been diagnosed with Crohn’s disease or colitis. One is still a teenager. “There are 30 to 40 times per year when I can still see and smell smoke from the smelter,” Ward said.

David Godlewski, vice president for Teck American, the U.S. subsidiary of the Canadian company that owns the smelter, declined to comment for this story. In past interviews, however, Teck Resources officials said that ongoing plant upgrades have reduced the Trail smelter’s air and water emissions by 95 percent.

People in Northport are eager for answers.

“It’s not a very nice disease,” said Bob Jackman, a Northport resident whose wife was diagnosed with ulcerative colitis in her 40s. She often swam in the Columbia at a beach across the river from the Mitchell Road property where Kalamarides grew up.

Her parents moved there in the 1950s, thinking the 150 acres would provide a wholesome setting to raise their six children, said Kalamarides, who now lives in Alaska. Her father was a truck driver. Her mother tended a large garden and the family raised chickens, hogs and cattle for meat.

“My mother’s grocery bill in the summer was less than $5,” said Theresa Finnigan, Kalamarides’ twin sister.

“We irrigated out of that river,” Kalamarides said. “You can’t see the pollution coming up with your lettuce.”

In the 1980s, the state of Washington placed air monitors on the family’s farm. They detected elevated levels of arsenic and cadmium.

A few years earlier, Kalamarides had been diagnosed with ulcerative colitis. At age 28, she had her colon removed.

The surgery followed severe bouts of the disease. Internal bleeding made her anemic. Even with regular blood transfusions, she was frequently fatigued. Maintaining her weight was a struggle; it slipped to 90 pounds. As slight as she was, her face was puffy from powerful prescription steroids she took to help keep the ulcerative colitis in check.

“You’re in pain every day,” she said. “Your life starts to revolve around the disease.”

As a young woman, Kalamarides found ulcerative colitis embarrassing to discuss. Removal of her colon cured her symptoms but required her to wear a bag – and later a catheter – to eliminate waste.

Now that she’s in her 50s, Kalamarides finds it easier to talk about the disease’s impact on her life.

She finds it disturbing, however, that diagnoses of Crohn’s disease and colitis are still occurring in Northport.

“We need to understand what’s happening,” she said, “or this could go on forever.”

If you or a family member suffers from Crohn’s or Colitis take a moment to complete an online survey that can provide info needed to find cures!

Your participation in an online research study
can help us find cures!

CCFA Partners has the unprecedented potential to improve the quality of life for patients everywhere. Join the 10,000 people who are already helping us build knowledge for a better future. All you need to do is fill out an online survey.

How does CCFA Partners work?
We want to enroll as many people with Crohn’s disease or ulcerative colitis from across the country as possible and hope that you will be among them. We will gather information about you and your experience with Crohn’s or colitis through a brief, confidential online survey. We will contact you by email every three months to let you know about our progress, and provide you with educational information about IBD and IBD therapies. Every six months we will ask you to update us about your condition in a brief follow-up survey. There is no cost involved. All data will be collected using a secure Internet server, so your personal information is safe and confidential. To start your survey, please click the special link at the end of this email.

If you decide to join CCFA Partners now, you can opt out at any time in the future.

We hope that you will participate fully — the more people who participate, the more reliable the research results will be! Thank you for your consideration.

If you are 18 or older and want to continue to the survey, please start your survey here.

Comments worth posting – a special thank you from The Northport Project to Shayla

Comment from Shayla Phillips:

I cannot thank you enough for writing this….I am in the eigth grade and I am doing a school project on Northport. There was so much info on Northport in this and I fully enjoyed reading. Im Stephanie and Levi’s younger daughter Shayla

Shayla 

_________________________________________________________________________________________________

Response submitted by The Northport Project  | In reply to Shayla.   

Hi Shayla –
Thank you for all the support you and your family have given me. It is actually because of you and your brother that The Northport Project even exists.

A few months after I began The Northport Project in 2008, I was so frustrated with the lies and misconceptions the DOH and EPA had told the kind people of Northport, along with the difficulty in getting past and present residents to fill out health questionnaires in order to move forward, I almost just gave up.

It was then that your Mom e-mailed me and told me of your brother’s diagnosis with Ulcerative Colitis and about your struggle with juvenile rheumatoid arthritis. That was the push I needed to not only keep going but to start pushing harder for the information the DOH and EPA were trying to avoid providing me and to push the past and present Northport residents to take the time to complete the questionnaires, necessary to get the information necessary to get epidemiological studies done in the area. Two years later we were able to get two physicians from the Crohn’s & Colitis Center at Massachusetts General Hospital to conduct the first phase of their epidemiological study of Northport residents, past and present, diagnosed with Ulcerative Colitis and Crohn’s disease. The Northport IBD Study, (designed specifically for Northport), just concluded phase I of this study, in which the physicians were able to conclude that there is a health cluster of these diseases currently in the community, and that there has been a consistent cluster of these diseases since approx. 1955-60. With this information they are currently preparing an abstract, which will be used to obtain grants and funding for phase II, and eventually a manuscript of their findings. The results of this study could very likely help in discovering the cause, or specific triggers, of Ulcerative Colitis and Crohn’s disease, still unknown to the medical and scientific community.

So it is you I should be thanking. It is because of your Mom and her description of the suffering both you and your brother have endured so courageously. As well as your parents unselfishness to contact me to contribute whatever information they could in order to ensure this did not happen to any other children. They were not looking to blame anyone, or for compensation for the pain and suffering your family had endured (although they have every right to!), they honestly just wanted to help.

So thank you sweetie – and please feel free to e-mail me anytime – jamie_paparich@hotmail.com

Sincerely,
Jamie Paparich

CCFA – Patient Participation for Research Registry

http://www.ccfa.org/trials/studies/CCFAPartners

 

 

The Crohn’s & Colitis Foundation of America is in the process of developing CCFA Partners, a new program aimed at enlisting patient and family participation in activities to further increase our understanding of Inflammatory  Bowel Diseases (IBD). Specifically, CCFA is assessing the feasibility of building a long term patient registry to support IBD research.

CCFA sponsors many targeted research projects on an ongoing basis and one of the challenges is identifying IBD patients who are eligible to participate in clinical studies. By establishing a registry of patients from across North America, we can broaden participation and inform patients who are members of the registry of upcoming projects which may be of interest to them.  Increased patient involvement can lead to more rapid research progress by shortening the time required to compile sufficient research data to complete the project(s).

At this time, we are investigating the feasibility of establishing such a patient registry by soliciting opinions and recommendations about how to organize the registry from a small, randomly chosen number of patients and/or their family members, and/or other CCFA members and supporters. You may be contacted by email or by direct mail in the near future and asked to complete a brief online survey by our Data Center at the School of Medicine of the University of North Carolina at Chapel Hill. These email survey invitations are sent from pasp_cgibd@med.unc.edu and they contain a direct link to the survey in the body of the email. We hope you will support this most important initiative.

If you have questions, please contact us at: info@ccfa.org

The investigators of CCFA Partners are:
Lloyd Mayer, MD
Chair, National Scientific Advisory Committee

Bruce Sands, MD, MS
Chair, Clinical Research Alliance

James D. Lewis, MD, MSCE
Vice-Chair, Clinical Research Alliance
Chair-Elect, National Scientific Advisory Committee

Sunanda Kane, MD
Chair, Patient Education Committee

Updated: 6/3/10

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