Archive for the ‘CCFA’ Category

Runaway Train

Small communities through-out the United States are slowly, and unknowingly, being poisoned.  The poisons are unavoidable.  The residents are exposed to them from the air and dust they breath, the water they drink, the soil they grow gardens in, and the small particulate matter that they absorb through their skin.  There is no where to hide, and even if there were they aren’t even aware of the danger they should be hiding from. The question is, perhaps they are better off not knowing?

Industrial pollution is nothing new.  To a small community the benefits usually outweigh the cost.  These industries bring hundreds, if not thousands, of jobs to their community.  They bring with them a promise of a better future.  A promise of job security, retirement, 401k’s, insurance.  They also bring with them their pollution.  Industrial pollution is an unavoidable consequence that we have been aware of since the Industrial Revolution began in 1840.  For well over a century the damage the toxic by-products of these industries were basically ignored.  There was very little evidence that the pollution was causing effects to people’s health or the environment.  By the time enough scientists, environmentalists, and personally affected advocates took notice the problem was like an oncoming, out of control train with no brakes.  Stopping it would take a miracle, ignoring it would eventually cause a disaster unlike any we had ever seen.

The Government saw the train coming, so they attempted to slow it down.  The Environmental Protection Agency (EPA) was established on December 2, 1970.  Once the EPA fully understood the depth of the damage they were dealing with more government agencies were formed, specifically the Department of Health (DOH).  The amount of locations and the severity of the damage industrial polluters had created was simply unmanageable.  In 1980, in an attempt to hold these polluters financially responsible for the clean-up of these sites, a federal law was passed.  The Comprehensive Environmental Response, Compensation, and Liability Act (CERCLA).  In 1986 The Superfund Amendments and Reauthorization Act of 1986 (SARA) was also passed.  CERCLA & SARA gave the EPA the resources to establish and begin remediation of Superfund sites, locations throughout the U.S. so contaminated they require long-term investigations and millions of dollars of remediation to effectively clean up the hazardous materials.

Almost all Superfund sites are located near communities impacted by the toxins from the site.  The Agency for Toxic Substances and Disease Registry (ATSDR) was created to assist the EPA with the hundreds of health consultations of impacted communities at Superfund sites needed.  It appeared the Government’s attempt to at least slow down the train was working, in theory.

My family is from Northport, Washington. We were one of those communities blissfully ignorant that we were slowly being poisoned. Northport is located in northeast Washington, 12 miles from the Canadian border.  It is a breathtaking little town, situated on the banks of the mighty Columbia River.  It is a small, close knit community of 375 people.  Many of the residents are from the families of the town’s original settlers.   

For over 100 years the residents of Northport have been, and continue to be, poisoned by the heavy metal toxins released by Teck, a lead and zinc smelter in Trail B.C. Canada.  The discharge from Teck’s smelting process is referred to as slag.  Slag is a black, sand like material that contains arsenic, lead, cadmium, and mercury.  From 1906 – 1996 Teck disposed of their slag through two specially designed pipes that dumped it directly into the Columbia River, 3 miles upriver from Northport.  Teck’s records indicate they dumped approximately 9.8 million tons of slag into the river over the course of 90 years. 

The air emissions from Teck’s smelting process are released from two smoke stacks. Teck increased the height of these smoke stacks shortly after a lawsuit brought against them in 1933. Two farmers from Northport sued Teck for damages to their crops and cows, caused by the massive amount of sulfur dioxide Teck was releasing from the smoke stacks.  Statements from residents at the time recall the suffocating smell of the sulfur dioxide, paint peeling off cars, barb wire fences disintegrating, and farm animals falling over dead.  Teck eventually lost the suit and was told to find a way to drastically reduce their emissions of sulfur dioxide.  In an attempt to comply, but avoid financial loss, they raised the height of the smoke stacks.  Their theory was their air pollution would be dispersed high enough as to not cause damage to the environment below.  Unfortunately the increased height of the smoke stacks actually dispersed the pollution further.  This pollution often got trapped in the valley in Northport, giving the farms located in the valley the nickname of “the heavy fallout zone”.  All four Department of Ecology air monitoring studies done in Northport between 1992-1994 concluded levels of arsenic and cadmium were well above all safety standards.  Arsenic levels were 200 times higher than recommended safety levels.

The EPA conducted a site assessment of the area between 1999-2003.  They found it was so contaminated it fell under CERCLA, or the Superfund guidelines. A remedial investigation and feasibility study was planned. The EPA issued Teck a Unilateral Administrative Order, demanding they assist with the investigation.  Teck ignored the order, and the EPA all but forgot about it.  Until two members from the Colville Confederated Tribe filed a civil suit under CERCLA in 2004.  This suit demanded that the EPA enforce their order against Teck.  After several court battles Teck lost it’s last appeal and was forced to cooperate with the EPA to complete a study of the Upper Columbia River.  The first phases of the studies began in 2006.  After 9 years of testing, and usually re-testing, the studies are finally progressing.  There has been a clean-up of a beach and many residential soil clean-ups.

However, despite the data of contamination collected from the EPA investigations, and the multiple health issues reported by the residents, the DOH and the ATSDR did not think the health issues and exposure to the heavy metal toxins were linked.  In 2004 the ATSDR published their Public Health Assessment of Northport.  In it they stated “ATSDR’s conclusions are based on the environmental sampling and health outcome data that were available to ATSDR between 1995 and 1999. With few exceptions, these data showed no evidence of adverse health effects associated with exposure to environmental contaminants, but significant data gaps existed.”

When an established government agency tells you their is no evidence of health issues caused by your exposure to confirmed environmental toxins that should be a relief.  It was a relief, to many people.  However, the extremely high rate of rare illnesses and diseases diagnosed in three generations, of a town of approximately 350 people, still weighed on the community member’s minds.  The discussion of the illnesses died down a bit after the report.  Until the next diagnosis was made, and another, and then another.

Residents in Northport decided to conduct their own health survey in 2009.  Health questionnaires were distributed to current and past residents of Northport, spanning three generations. We received more than 500 completed questionnaires. Per the health cluster guidelines of the CDC and ATSDR, the results we collected from the returned questionnaires showed health clusters of brain aneurisms (23), specific cancers (65), parkinson’s disease/multiple scoliosis (13), thyroid diseases (116), and ulcerative colitis and crohn’s disease (54).   According to the ATSDR’s ToxGuide, the EPA’s toxicity profiles, and the DOH’s toxic standards, chronic exposure to the heavy metal toxins released by Teck can be linked to all of these health issues.

The DOH and the ATSDR had already discovered the health cluster of ulcerative colitis and crohn’s disease in the area in 1992 and 2004, but they claimed there was no way to link the extremely rare diseases to our exposure to the heavy metal toxins of concerns the EPA identified.   

After publishing the results of our community health survey a doctor with Massachusetts General Hospital’s Crohn’s and Colitis Foundation contacted us.  He conducted his own study on the reported cases of ulcerative colitis and crohn’s in the area.  The study concluded that the rates of these diseases were 5 to 11 times higher than expected.  Based on these results an additional study is being conducted of the residents with ulcerative colitis and crohn’s disease, focusing on the amount of accumulated toxins found in their systems and referencing the EPA residential soil study results.

I recently contacted the regional director of the ATSDR, Rhonda Kaetzel, and Kay Morrison with the WA DOH, regarding the Government agencies unwillingness to go forward with a human health assessment of Northport. The Canadian smelter has admitted fault for the pollution, and the environmental testing confirms the specific heavy metal toxins found above standard safety levels.  Armed with this information, it would seem our little town of 375 people would be ideal for several epidemiological research studies on the many health clusters discovered.  Many of the illnesses reported do not have cures, and what causes them has yet to be discovered.  In part, Ms. Kaetzel, the ATSDR director, responded with: “…DOH has communicated in the past that establishing a new link between a disease and environmental contaminant is not something that can be achieved without studying a large population of people with the disease and who have diverse exposures. Without a well-established link or specific funding, this type of research study is beyond the scope of the ATSDR-funded program within DOH and ATSDR.  Ms. Morrison’s response was more apologetic, in it she stated: “I understand that you’d like more research to be done to discover links between environmental contaminants and a number of reported illnesses in the Northport area.  Unfortunately EPA and ATSDR do not perform this kind of broad research….”

Chronic exposure to even low levels of heavy metal toxins cause health issues, the ATSDR, DOH, and EPA admit this.  The lack of knowledge on the actual health effects triggered or caused by this exposure are not well understood by these agencies due to the lack of long term investigations.  However, if they would utilize our established environmental history, and bio-monitoring of the impacted residents, a great deal might be learned.

Time and time again all of the Government agencies created to protect us have told me that our communities health issues are “beyond the scope” of their responsibilities.  So if it is none of these agencies responsibilities to protect future generations from the health issues possibly caused by long term exposure to low levels of these toxins, whose responsibility is it?

Maybe these agencies just assume it is better off not knowing.  Let someone else jump in front of that train.

Lawsuit against Teck Smelter Dismissed

In 2008, along with the non-profit group Citizens for a Clean Columbia (CCC), I began reaching out to past and present residents of Northport, WA. After a year of researching the Environmental Protecton Agency (EPA), Dpt. Of Ecology, Dpt of Health (DOH), and the Agency for Toxic Sustaces and Disease Registry  (ATSDR) studies conducted in the Northport area, I discovered information so unthinkable I really didn’t believe it to be true at first. The studies of the U.S. Government Agencies, mentioned above, were of interest to me because they were in regards to the century of heavy metal toxins Teck Cominco had dumped into the Columbia River, and into our air. Teck Cominco, now Teck Resources, is a Canadian lead and zinc smelter located 7 miles from Northport, 3 miles upriver, in Trail, Bristish Columbia.  The slag and air emissions they had sent our way are the by-products of the process Teck uses to smelter the lead and zinc ores. They contain heavy metal toxins such as arsenic, cadmium, lead, mercury, and sulfur dioxide, just to name a few.

What I discovered in these US agency investigations and reports is that since before 1940 thru 1997 Teck Resources dumped an estimated 9.8 million tons of slag (heavy metal toxins) directly into the Columbia River. This is the equivalence of a dump truck emptying 19 tons, every hour, for 60 years. 19 tons of poison AN HOUR was dumped into the Columbia River, everyday, for 60 years.  The smelter found a free way to dispose of their waste and never so much as questioned the consequences their actions would have on the Columbia River, the environment, or on the health of the residents living in the small communities along the Columbia.

Do you know what else I discovered in the US Agencies investigations and reports? It was just as, if not more, alarming than what I discovered Teck had done. The EPA, Ecology, DOH, and ATSDR had discovered the accumulated toxins, and knew the danger they posed to residents in the area, as far back as the mid 1980’s. However, all their investigations concluded that more information would be needed for further research, And that the area posed an “intermediate health hazard”, but residents were “most likely” not in any immediate danger. Never once did any of the Government Agencies warn, or even tell, anyone living in Northport that they had been, and continued to be, chronically exposed to multiple heavy metal toxins, through multiple routes of exposure, for decades.

The DOH and the ATSDR did a human health assessment in 1994 on a small percentage of residents, because at a town meeting the community demanded they look into the health issues found in many of the residents. They took the blood of approx.. 22 children in Northport. They tested only for lead. They then spoke to the many residents suffering from Thuroid Diseases, Inflammatory Bowel Disease (Ulcerative Colitis/Chrone’s), Multiple Scoliosis, Parkinson’s Disease, Brain Tumors/Aneurisms, Brain, Stomach, Kidney, Pancreatic, Bladder, Breast, Eye Cancer and Leukemia. The ATSDR concluded that, although the amount of illnesses found was uncommonly high, further environmental investigations needed to be done by the EPA and Ecology before the DOH could proceed. Ecology completed four air monitoring phases by 1997, all four phases showed levels of cadmium to be higher than recommended safety levels, and arsenic was found to be 300 times higher than accepted safety levels.  The DOH did no follow up on this information.  And, again, residents were not even made aware of the results.

My Father grew up in Northport, along with his siblings and parents. They all suffer, or suffered, from one of the illnesses mentioned above.

The Government Agencies we count on to protect us, and defend us, let us down. They looked the other way for decades as Teck was allowed to dump 9.8 million tons of heavy metal toxins/poisons into our water, as well as the heavy metal toxins (arsenic, cadmium, sulphur dioxide) that they released into our air through their smoke stacks. Even worse, when they were backed into a corner to conduct studies on the impact the toxins had on our environment and health they looked away again. The people I have spoken to with specific knowledge on the subject believe the studies are designed to find in favor of the polluter.  Especially when the polluter is in another country and a fight would cause a cross border litigation, which could back fire on the United States.

Finally, in 2006, Two members of the Pakootas Colville Tribe sued the EPA for inaction. The court ordered, under CERCLA/Superfund Laws, the EPA to immediately begin a Remedial Investigation/Feasibility Study (RI/FS) and a Human Health Risk Assessment of the area. With, or without Teck Resources assistance.

They needed to be sued to be forced to do their jobs to protect us.  These studies are still not complete. How many lives could have been saved if they would have done their jobs correctly from the beginning?

Not enough, according to Teck. An internal memo circulated among Teck management in 1982 that stated that the amount of toxins being dumped daily into the river, and specifically the recent accidental release of 6,630 pds of Mercury into the river, might pose as an issue for Teck down the line if safer guidelines were not put in place.  The memo went on to say immediate action was not necessary because, currently the toxins were coming into contact with an “insignificant amount of people”.  The insignificant people they are referring to are the residents of Northport.

So, Teck felt that the town of Northport, with only 375 residents, was simply insignificant in the grand scheme of things.  375 fathers, mothers, grandparents, children, sisters, and brothers…they were just not significant enough. The friends and family I have lost to these diseases were significant, I promise you that. The friends and family I continue to see suffer with these diseases; giving them basically no quality of life, they are significant.

So this is what led me to reach out to the CCC in 2008.  Many of the resident who began this fight had passed away, or were still living with their debilitating illnesses, as they now watched their children and grandchildren being diagnosed with the same illnesses.  With the assistance of the CCC, and the participation of residents, I conducted a community health survey on three generations of past and present Northport residents. From 2008-2009 I collected 321 questionnaires. The results of the questionnaires showed that, over three generations, 54 respondents had Ulcerative Colitis or Crohn’s Disease (a very rare disease),  65 respondents had one of the cancers mentioned above,  23 respondents had brain aneurysms/tumors,  8 respondents had pulmonary embolism,  9 respondents had MS, and  13 respondents had Parkinson’s disease. These are just some of the health issues that were discovered. This may seem like a somewhat small amount. But in a population of 375 people these disease rates are all considered epidemiological health clusters by the scientific community. Meaning their exposure to some environmental factor(s) were most likely the trigger of these diseases, or at least played a significant role.

Since this health survey was done by residents, and not by the EPA, Ecology, DOH or the ATSDR, they had no interest in the results.

Luckily, the results of the survey caught the attention of Dr. Korzenik, a physician and researcher from the Massachusetts General Hospital (MGH). He agreed to bring his assistants up to Northport, and with the help of MGH, and Harvard University, he conducted his own study on his specialty, Ulcerative Colitis and Crohn’s Disease. It bares mentioning he has done countless of these studies over the years. After months and months of walking door to door, calling, and emailing residents to complete his survey, gathering medical history, and mapping out the findings, he was ready to publish his results. He discovered that the health cluster of residents with Ulcerative Colitis and Crohn’s Disease found in Northport, WA was one of the biggest he had ever seen. It was 11.5 to 15% higher than would be expected. He also believed this could be a once in a lifetime opportunity to study these diseases that currently have no cure, and are very rare and very misunderstood.

Dr. Korzenik and I shared the same hope. That once his study was published in a scientific journal we would get the attention needed to hold Teck responsible and use the suffering residents of Northport, who were more than willing, to take part in an epidemiological study on them and the area. Further studies could lead to information that could help cure, or at least prevent, people from getting Ulcerative Colitis and Crohn’s Disease in the future. We also hoped the study would attract the attention of specialists in Multiple Scoliosis, Parkinson’s, specific Cancers, etc. This little town, that had suffered over three generations was willing to let themselves be poked and prodded in the hopes to save future generations from suffering the pain and anguish they had lived with. They didn’t want money, they didn’t want the smelter to be shut down, they just wanted to help. And they wanted their Government Agencies to help them, in forcing the smelter to cut their toxic releases to the levels their permits allowed.

As Dr. Korzenik worked on his study, and was shopping it around for publication, an excellent law firm from Seattle contacted me. They wanted all my research and I happily sent it on to then, along with the smoking guns…the US Agencies own published reports.

The law firm believed that, along with the real evidence, provided by Teck because of the Freedom of Information Act, the US Agencies lack of investigating, and the results and publication of Dr. Korzenik’s study, these long-suffering residents had a real shot at bringing a civil lawsuit against the multi million dollar smelter. Most of the residents were not that interested in joining the class action suit. They believed that no amount of money would bring back their loved ones, or the years their poor health had stolen from them. Also, they told me again and again…”you don’t stand a chance.” They told me, Teck is a Canadian company the US does not want to get into a cross border litigation with, and their pockets are very deep. They had been fighting this fight for decades. Since the first Northport farmers sued Teck in 1933 for their air emissions killing their livestock and crops, to the groups of residents who continued the fight since. My Grandparents were a part of the CCC, and apart of that fight. My Grandpa succumbed to Leukemia and my Grandma passed away because of Parkinson’s.

But these excellent lawyers believed in the case. The lawyer’s initial filing was accepted by the Court. Teck, of course, filed for the case to be dismissed. The Judge denied their request to dismiss the case, and said they would stand trial. This finally happened in January of 2015. 7 years after I began this journey, and 101 years after the smelter began using the Columbia River as their personal toxic dumping ground, and sending their toxic air emissions down wind to settle into the Northport valley.

We were getting closer than we had ever gotten. However, in May of 2015 I received a call from our lawyer. Dr. Korzenik’s compelling, and undeniably groundbreaking research paper had been suddenly denied publication in any scientific journal. Without this study being published, by the scientific community, they could not go forward with the lawsuit. And although Dr. Korzenik is still actively trying to get the study acknowledged in the scientific community, the law firm had no choice but to withdrawal the civil suit and let Teck walk again. The lawyers themselves indicated to me that it was very probable Teck played a role in getting the planned publication of the study squashed.

So after all the work of countless people it seems Teck wins again, for now. I did reach out to Teck and asked, since they had openly admitted in court, that they did in fact pollute the river as was reported, if they would consider funding annual check-ups, blood tests, and hair samples to monitor the heavy metal build up in residents, and to provide proactive exams to detect the diseases found in the area in residents. They declined, probably because they still refuse to admit there is any connection between the toxins they admit to dumping by the truckload for over 100 years, and the health issues found in the residents of Northport. Did I mention all the illnesses found in clusters in the residents have all been scientifically linked to chronic exposure to the heavy metal toxins Teck has admitting been releasing for decades.

 

Please feel free to email me with any questions or ideas.

 

Thank you for taking the time to read this!

 

Jamie Paparich

paparichj@live.com

www.northportproject.com

Radio interview on Northport IBD study results

Tuesday August 14, 2012

Doctor confirms high rate of colitis south of Teck smelter

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Teck’s lead and zinc smelter in Trail, B.C., upstream from Northport, Washington. (Contributed by: Teck Resources)

To residents of Northport Washington, the news might not be a surprise — but for many, it might be validation.

Northport is a community of about 300 people located on the Columbia River.

For years, residents have claimed that something is making them sick, and they point north to the Teck smelter, just 35 kilometres upstream, in Trail.

We still don’t know exactly what’s behind the illnesses.

But now we do know for sure that something strange is going on in Northport.

A new survey by researchers at Harvard Medical School shows rates of colitis and Crohn’s disease are 10 to 15 times higher than normal in Northport, and those researchers have ruled out genetics as a possible cause.

Jamie Papparich is a community activist from Northport who’s been raising the alarm for years. In fact, she lobbied the medical community to get involved and to undertake this very survey.

She spoke with Daybreak host, Chris Walker……

To hear my radio interview with Chris Walker click on the below link:  

http://www.cbc.ca/daybreaksouth/news/2012/08/14/doctor-confirms-high-rate-of-colitis-south-of-teck-smelter/#socialcomments#socialcomments

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.

Help Save IBD Research Funding

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Help Save IBD Research Funding

Take Action!
Contact Your Legislator Today

Urge Your Legislators to Fund IBD Research

President Obama submitted his Fiscal Year 2013 (FY13) budget proposal to the Congress, the request did not include funding for the Centers for Disease Control and Prevention’s (CDC) IBD program.

We need to ask Members of Congress for full funding for CDC’s IBD program in FY13! The target funding for CDC’s IBD program for FY13 is $686,000.

To fund this program, we must encourage Members of Congress to contact the appropriations committee.

It’s as easy as a couple clicks.
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What is autoimmunity and autoimmune diseases?

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Spotlight on:
The American Autoimmune Related Diseases Association (AARDA)

What is autoimmunity?

One of the functions of the immune system is to protect the body by responding to invading microorganisms, such as viruses or bacteria, by producing antibodies or sensitized lymphocytes (types of white blood cells).

Under normal conditions, an immune response cannot be triggered against the cells of one’s own body.

In certain cases, however, immune cells make a mistake and attack the very cells that they are meant to protect. This can lead to a variety of autoimmune diseases. They encompass a broad category of related diseases in which the person’s immune system attacks his or her own tissue.

What causes autoimmunity?

The immune system normally can distinguish “self” from “non-self.” Some lymphocytes are capable of reacting against self, resulting in an autoimmune reaction. Ordinarily these lymphocytes are suppressed. Autoimmunity occurs naturally in everyone to some degree; and in most people, it does not result in diseases.

Autoimmune diseases occur when there is some interruption of the usual control process, allowing lymphocytes to avoid suppression, or when there is an alteration in some body tissue so that it is no longer recognized as “self” and is thus attacked. The exact mechanisms causing these changes are not completely understood; but bacteria, viruses, toxins, and some drugs may play a role in triggering an autoimmune process in someone who already has a genetic (inherited) predisposition to develop such a disorder. It is theorized that the inflammation initiated by these agents, toxic or infectious, somehow provokes in the body a “sensitization” (autoimmune reaction) in the involved tissues.

What are the types of autoimmunity?

Particular autoimmune disorders are frequently classified into organ-specific disorders and non-organ-specific types. Autoimmune processes can have various results, for example, slow destruction of a specific type of cells or tissue, stimulation of an organ into excessive growth, or interference in its function. Organs and tissues frequently affected include the endocrine gland, such as thyroid, pancreas, and adrenal glands; components of the blood, such as red blood cells; and the connective tissues, skin, muscles, and joints. Some autoimmune diseases fall between the two types. Patients may experience several organ-specific diseases at the same time. There is, however little overlap between the two ends of the spectrum.
In organ-specific disorders, the autoimmune process is directed mostly against one organ. Examples, with the organ affected, include Hashimoto’s thyroiditis (thyroid gland), pernicious anemia (stomach), Addison’s disease (adrenal glands), and type 1 diabetes (pancreas).

In non-organ-specific disorders, autoimmune activity is widely spread throughout the body. Examples include rheumatoid arthritis, systemic lupus erythematosus (SLE or lupus), and dermatomyositis.

What are some of the treatments for autoimmune diseases?

Of first importance in treating any autoimmune disease is the correction of any major deficiencies. An example would be replacing hormones that are not being produced by the gland, such as thyroxin in autoimmune thyroid disease or insulin in type 1 diabetes. In autoimmune blood disorders, treatment may involve replacing components of the blood by transfusion.
Second in importance is the diminishing of the activity of the immune system. This necessitates a delicate balance, controlling the disorder while maintaining the body’s ability to fight disease in general. The drugs most commonly used are corticosteroid drugs. More severe disorders can be treated with other more powerful immunosuppressant drugs, such as methotrexate, cyclophosphamide, and azathioprine.
All of these drugs, however, can damage rapidly dividing tissues, such as the bone marrow, and so are used with caution. Intravenous immunoglobulin therapy is used in the treatment of various autoimmune diseases to reduce circulating immune complexes. Some mild forms of rheumatic autoimmune diseases are treated by relieving the symptoms with nonsteroidal anti-inflammatory medications. Drugs that act more specifically on the immune system, for example, by blocking a particular hypersensitivity reaction, are being researched.

What is the family connection in autoimmune diseases?

The ability to develop an autoimmune disease is determined by a dominant genetic trait that is very common (20 percent of the population) that may present in families as different autoimmune diseases within the same family. The genetic predisposition alone does not cause the development of autoimmune diseases. It seems that other factors need to be present as well in order to initiate the disease process. It is important for families with members who have an autoimmune disease to mention this fact when another member of the family is experiencing medical problems that appear to be difficult to diagnose.
How many Americans have an autoimmune disease?

Approximately 50 million Americans, 20 percent of the population or one in five people, suffer from autoimmune diseases. Women are more likely than men to be affected; some estimates say that 75 percent of those affected–some 30 million people–are women. Still, with these statistics, autoimmunity is rarely discussed as a women’s health issue.

What is AARDA?

AARDA (The American Autoimmune Related Diseases Association) is a 501(C)(3) nonprofit organization. AARDA was founded in 1991 to increase awareness about autoimmune diseases. Today it has grown to become the premiere national organizationn on the forefront of autoimmune disease awareness, treatment, research, advocacy and patient information.

What are the goals of AARDA?

The American Autoimmune Releated Diseases Association’s goals are set forth in our Mission Statement:
AARDA is dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity through fostering and facilitating collaboration in the areas of education, public awareness, research, and patient services in an effective, ethical and efficient manner.

How is AARDA funded?

AARDA receives one hundred percent of its annual funding requirements from contributions and donations made by people such as yourself. We are proud that AARDA provides substantial services with very low overhead. At AARDA, over 92% of all contributions are used for research, education and patient services. We are able to accomplish this efficiency because we are staffed primarily with volunteers.
Is AARDA associated with the government?

AARDA is a private nonprofit organization. It is not associated with any State or Federal governmental agency. AARDA does, however, advocate for passage of legislation important to autoimmune research and patients suffering from an autoimmune disease.

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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

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