Category Archives: Research

Hydraulic Fracturing and Health Concerns

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(Please note:  I am in no way an expert in the field of hydraulic fracturing, but did spend a few months researching and working on an argumentative research paper for a college course and thought I would share it with you along with some of what I learned along the way.)

Hydraulic Fracturing and Health Concerns
As human beings there are two basic elements that we need for survival; oxygen and water. Industrialization put these precious resources in harm’s way by polluting our air and leaking toxic chemicals into our water. Currently one of our growing threats to clean air and fresh water is hydraulic fracturing. Since first being introduced in the late 1940’s, hydraulic fracturing has grown exponentially, especially in the last two decades, yet long term environmental and health effects are still unknown.
Hydraulic fracturing, which is commonly known as fracking, is an effective method of drilling for natural gas that is located in the earth. During hydraulic fracturing water that is mixed with sand and a variety of chemicals, is highly pressurized and used to break through sandstone and shale in order to reach natural gas deposits thousands of feet within the earth. The hydraulic fracturing process consists of two main parts: “well development and production” (McKenzie, Witter, Newman, Adgate 79). The first step in well development is preparing the drilling pad. Second comes the actual well drilling process. The final step in well development is the completion process. During the completion process the fracking fluids, along with natural gas, is brought back to the surface, then the newly drilled well is capped off so that the natural gas doesn’t escape. At this point the natural gas can be harnessed for use by being transported through pipelines and by tanker trucks.
Fracking fluid contains 99 percent water mixed with sand or silicate materials and a 1 percent chemical concoction. The sand or silicate helps to hold the cracks that are formed during the drilling process open. The chemicals used in the fracking fluid “includes acids, solvents and corrosion inhibitors” (Tollefson 146) that help keep the well from plugging up as it is being drilled. This mixture of fracking fluids is drilled into the ground at an average 9,000 pounds per square inch. As the fracking fluids are going into the ground it breaks the shale open so that natural gas can be released. Each new natural gas well takes an average of 2 to 5 days to frack and uses an average of 4.4 million gallons of fracking fluids (State Impact Pennsylvania). Each well can be fracked up to ten times while each drilling pad can have as many as 28 wells on it (The Endocrine Disruption Exchange). Once a well is completed the fracking fluid is then brought back up to the surface and stored in pits or large tanks until it can be treated.
The following infograph is a visual example of how the hydraulic fracturing process works.

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Granberg, Al, Schmidt, Krista K. “Infographic: What Is Hydraulic Fracturing?” ProPublica 3 Aug. 2010. Web. 2 March 2014.
In our continuous search to find a cleaner and greener energy alternative natural gas has become a shining star. Coal has been used for many years, but is not clean burning. According to studies natural gas burns “about 40 percent cleaner than coal” (Harder). Robert Howarth, biogeochemist, ecosystem scientist and researcher from Cornell University argues that once the methane emissions from hydraulic fracturing are added in “natural gas could be twice as dirty an energy source as coal” (Harder). On September 16, 2013 the Proceedings of the National Academy of Sciences reported that “significant leaks of heat-trapping methane from natural gas production sites would erase any climate advantage the fuel offers” (Lovett). Though natural gas is cleaner burning than coal, the environmental impact, if large drilling companies don’t follow regulations and watch drilling emissions, could be catastrophic. Large drilling companies have a long way to go until natural gas is a viable “clean” energy alternative.
Although hydraulic fracturing has been around since the 1940’s, it wasn’t until recently that the industry has boomed. According to the United States Environmental Protection Agency hydraulic fracturing has grown by eightfold in the past decade, and is expected to account for almost half of the United States’ natural gas production by 2035. In 1990 there were only around 269,000 natural gas wells in the United States, by 2010 that number had risen to nearly 500,000. It is estimated that from 2012 until 2035 there will be 17,000-35,000 new natural gas wells drilled per year. This continued growth is helpful for our economy, but is drawing health and environmental concern.
As hydraulic fracturing becomes more prevalent so does public concern. Environmentalists, researchers and the public are concerned about the environmental and health effects of hydraulic fracturing as many of the chemicals used during fracking have been linked to health issues. Methane has been found in drinking-water sources near drilling sites and air emissions from hydraulically fractured wells have been shown to contain volatile organic compounds. Methane is a very powerful greenhouse gas which diminishes the ozone layer. VOCs or volatile organic compounds have been classified by the EPA as toxic and hazardous air pollutants, which have direct links to human health issues including cancer. In the United States the largest polluter of VOCs is the natural gas and oil drilling industry (“The Future of Fracking”). Regulations are in place and new regulations are being introduced to help make hydraulic fracturing as safe as possible for the environment and human health, but even with the regulations there is no way of fool-proofing hydraulic fracturing so that it is 100 percent safe.
For many years air emissions in relation to hydraulic fracturing went unregulated. Federal and state governments have been creating new rules and regulations that drilling companies need to follow to help keep emissions and contamination at a minimum. The EPA announced new air pollution regulations in 2012 that all drilling companies will need to comply with or face possible fines. The new regulations require that drilling companies follow a green completion process, which is estimated to reduce the amount of air emissions by 99% coming from fracking sites. Environmental Health Perspectives, a monthly journal that publishes peer-review research about health and the environment, published an article called “The Future of Fracking: News Rules Target Air Emissions For Cleaner Natural Gas Production” that explored emissions and regulations in great depth. The article states that drilling companies need to “capture the targeted emissions” during the completion process when fracking fluids flowback and methane come back up prior to capping the well off. Natural gas drilling companies will be required to start capturing the methane that comes back up the well with the fracking fluids once the well is complete. The new regulations require that drilling companies be green compliant by January of 2015. Drilling companies are encouraged to complete the green completion process or be green compliant voluntarily prior to January of 2015. Devon Energy is a large drilling company “that has been using green completion equipment for more than half a dozen years” (“The Future of Fracking” A272+). If drilling companies do not adhere to the new regulations by January 2015 they will be required to flare (burn off) the emissions coming off the wells. The EPA has estimated that once the green completion process is in full swing it “will result in reductions of 190,000 tons of VOCs, 11,000 tons of hazardous air pollutants and methane equivalent to 18 million tons” (“The Future of Fracking” A272+). Since the preindustrial era the concentration of methane in the atmosphere has gone up almost 160 percent (Lavelle). The regulations however are only aimed at newly drilled wells, as they do not apply to existing wells. Many older wells have been shown to be producing a large amount of air emissions as they are leaking or were not capped off correctly. Many states are being proactive to ensure their air quality doesn’t suffer due to hydraulic fracturing by making sure the new regulations are followed.
Colorado is a leader in air emission research and model in groundbreaking regulations. At this time Colorado is the sixth-largest producer of natural gas in the United States. Colorado “has seen a 450% increase in natural gas production” (“Putting The Heat On Gas”) since 1990. On February 22, 2014 the Colorado Air Quality Control Commission approved new regulations that require drilling companies to “fix persistent leaks from tanks and pipes” (Oldham). Andarko Petroleum Corp., Encana Corp. and Noble Energy Inc. are three large drilling companies that worked with environmentalists in Colorado to back the new rules. The new rules require gas drilling companies to “monitor leaks from equipment at drilling pads, at tanks and at compressor stations” (Gold). The Department of Public Health and Environment in Colorado estimates that by monitoring leaks from equipment, tanks, compressor stations, processing plants and limiting flaring, VOC emissions may be reduced by as much as 34% per year (Gold). Lisa McKenzie, Ph.D., MPH, and researcher with the University of Colorado Denver spent three years studying air emissions from natural gas wells in Colorado and found that people living within half a mile of a drilling site were exposed to hydrocarbons such as toluene, xylene and benzene which is a known carcinogen (cancer causing agent). Families living close to wells suffered from difficulty breathing, headaches and sore throats. The hydrocarbons coming from the natural gas wells have been linked to respiratory and neurological issues (McKenzie, et al). Lisa Mckenzie said “Our data shows that it is important to include air pollution in the national dialogue on natural gas development that has focused largely on water exposures to hydraulic fracturing” (University of Colorado Denver). With hydraulic fracturing continuing to grow, related air emission health concerns will also continue to grow. Continuing to research, regulate and keep the public informed are all steps that will need to be taken to help lessen the effects of hydraulic fracturing air emissions.
Along with air emission concerns are concerns with ground water contamination linked to hydraulic fracturing. A large amount of methane emissions appear to be coming from leaking natural gas wells. Much of the contaminated groundwater comes from well casings leaking and seems to occur when natural gas wells are drilled near shallow drinking water aquifers (Aldhous). Duke University chemical engineer named Robert Jackson, in a study done in Pennsylvania, found that methane levels in drinking-water from water wells that were within a mile of fracking wells contained a six times higher concentration of methane than water wells further away from fracking sites. Robert Jackson “found methane in 115 of 141 shallow, residential drinking-water wells” (Fischetti 21). Some families who have leased their land to oil and natural gas drilling companies have experienced fizzing or hissing water, water that has a strong odor, discolored water, and water that they can light on fire (Lavelle). Fracking experts have found that gas wells drilled on the Marcellus Shale have a higher percentage of leaking wells than “oil and gas wells drilled into other formations” (Fischetti 21). Large drilling companies argue that there is no way that their drilling can be causing the contamination in drinking-water as they drill thousands of feet into the ground and far below water aquifers, yet the families experiencing contaminated water never had a problem prior to the hydraulic fracturing in their areas.
Large oil and natural gas drilling companies are exempt from the Safe Water Drinking Act, which means that many of the chemicals that are pumped into fracking wells are not monitored or have very little regulation. In 2012 eleven states required natural gas drilling companies to disclose the chemicals they used during hydraulic fracturing and nine more states were in the “process of adopting” the same disclosure regulations (Kulander). Many drilling companies have started to report the chemicals they use during fracking to online chemical-disclosure registries. FracFocus is one of these online registries and thus far over 500 drilling companies have reported the chemicals they use (Tollefson). According to FracFocus Chemical Disclosure Registry they identify close to 60 chemicals that are “commonly” used in hydraulic fracturing (FracFocus). FracFocus currently has 62,887 well sites registered on their site. Some of the chemicals used have been linked to endocrine disorders, birth defects and cancer. The Endocrine Disruption Exchange has identified over 600 different chemicals in fracking fluid (TEDX). Scientists hope that eventually a database of all fracking chemicals will be available so that they can do further research and in time develop greener methods and alternatives that will lessen the environmental and health effects of fracking (Tollefson). Having open knowledge to the chemicals being used during hydraulic fracturing will also help in diagnosing illnesses and coming up with a treatment plan for related illnesses.
Although there are state and federal regulations that large drilling companies have to adhere to, there are also a lot of loop holes in the system. Hydraulic fracturing is exempt from many clean air and water acts. “Without restraints from the Clean Water Act, Safe Drinking Water Act, Clean Air Act, and CERCLA, the gas industry is steamrolling over vast land segments” (TEDX). Unfortunately there are some major loop holes in the reporting system which makes it very hard to document all of the used chemicals. Some of the issues that come with reporting the chemicals used in fracking is that not all states have disclosure laws and often times in the states that do have disclosure laws the laws only require disclosure for public lands and much of the drilling is happening on private land. Another huge loop hole in the regulation and documentation of chemicals used in fracking is “trade secrets” otherwise known as a chemical mixture produced by large drilling companies that they consider their intellectual property, which can contain a large variety of chemicals (Tollefson). As stricter regulations and guidelines pertaining to hydraulic fracturing continue to develop, many of the loop holes will hopefully disappear.
Even with evidence showing that the chemicals used during hydraulic fracturing and air emissions from wells are causing health issues for people living nearby there are still those who argue that there is not enough evidence directly linking hydraulic fracturing to the health concerns. Peter Aldhous, Ph.D. and freelance journalist states “evidence that fracking poses serious risks to human health or the environment, beyond the pollution associated with fossil fuel extraction is scant” (Aldhous 8). McKenzie and her research team state “further studies are warranted, in order to reduce the uncertainties in the health effects of exposures” (McKenzie, et al, 86). As advances in research, continued studies and overall chemical identification increases, so will the knowledge of long-term health effects of hydraulic fracturing.
Documentaries have opened many people’s eyes to the dangers, both health and environmental, wise of hydraulic fracturing. Gasland and Split Estate both show how hydraulic fracturing is effecting the people living nearby. Families tell stories of their water being contaminated and flammable due to methane, illnesses and even deaths in animals living near contaminated water sources. Headaches, rashes, difficulty breathing, and burning eyes are just some of the symptoms described in these documentaries that the families have been experiencing. Both documentaries show large drilling companies paying families off and having them sign non-disclosure paperwork so that they are not allowed to tell their stories to the media. Drilling companies argue stating that the stories told in these documentaries are extreme cases and are very rare (Gasland, Split Estate). Natural gas drilling companies and hydraulic fracturing has a negative image in media and the public’s minds. Documentaries like Josh Fox’s Gasland that show drinking water out of the faucet starting on fire due to being contaminated with methane does not help big oils image. The oil and natural gas industry haven’t helped their image by trying to fight federal drilling regulations and opposing disclosing the chemicals they use while fracking. Not only does the industries fight against regulatory legislation give them a negative image, but a “lack of public data” continues to fuel distrust (Harder). Not all large oil and gas drilling companies are trying to keep their chemical usage private or fight legislation. There are many large drilling companies that are complying with regulations and working with environmental groups to help lessen the impact of hydraulic fracturing.
Although, there are some major concerns linked with hydraulic fracturing in relation to the environment and health issues, there are some very positive aspects of hydraulic fracturing. Large oil and natural gas companies provide over 9 million Americans with jobs. Oil and natural gas also “contributes more than $86 million to the Federal Treasury every day” (API) which helps economic security and growth. The expansion of the oil and natural gas industry throughout the United States has helped make America less reliant of foreign fuels. According to the U.S. Energy Information Administration the United States was importing close to 60 percent of its petroleum in 2005. By 2011 the percentage of petroleum imported went down by 15 percent, largely in-part to oil and natural gas production growing in the United States (EIA). Oil and natural gas are huge contributors to our economy and job growth. Without having oil and natural gas production the United States would be completely reliant on imports of petroleum from over-seas, our job market would suffer, as would our economy.
With the cooperation of natural gas drilling companies, diligence of environmentalists and the concerned public, and further research, hydraulic fracturing has the potential of being a safe and clean method of harnessing natural gas. The long term goal is clean energy, at this point natural gas has the potential of providing a clean energy source. Other energy options that are safer for the environment and health of the public need to also be considered. Wind and solar power have both also proven to be very good sources of energy that have smaller environmental footprints than natural gas production. In the end having a reliable source of energy that is safe for the earth and its inhabitants is the goal.

 
Works Cited
Aldhous, Peter. “Drilling Into The Unknown.” New Scientist 213.2849 (2012): 8-10. Academic Search Premier. Web. 6 Feb. 2014.
American Petroleum Institute. American Petroleum Institute. API, 2013. Web. 29 Jan. 2014.
The Endocrine Disruption Exchange. The Endocrine Disruption Exchange. TEDX, 2014. Web. 27 Jan. 2014.
FracFocus Chemical Disclosure Registry. FracFocus Chemical Disclosure Registry. FracFocus, 2014. Web. 27 Jan. 2014.
Fischetti, Mark. “Fracking And Tainted Drinking Water.” Scientific American 309.3(2013): 21. Psychology and Behavioral Sciences Collection. Web. 8 Feb. 2014.
Environmental Health Perspectives. “The Future Of Fracking: News Rules Target Air Emissions For Cleaner Natural Gas Production.” Environmental Health Perspectives 120.7 (2012): A272+. Environmental Studies and Policy. Web. 2 Feb. 2014.
Gasland. Dir. Josh Fox. HBO Documentary Films, 2010. Film.
Granberg, Al, Schmidt, Krista K. “Infographic: What Is Hydraulic Fracturing?” ProPublica 3 Aug. 2010. Web. 2 March 2014.
Gold, Russell. “U.S. News: Colorado To Tighten Drilling Rules—Democratic Governor’s Move Follows Votes In Four Localities To Ban Fracking.” Wall Street Journal, Eastern Edition ed. Nov. 19 2013. ProQuest. Web. 16 Feb. 2014.
Harder, Amy. “A Fracking Mess.” National Journal (2011). Opposing Viewpoints in Context. Web. 29 Jan. 2014.
Kulander, Christopher S. “Shale Oil And Gas State Regulatory Issues And Trends.” Case Western Reserve Law Review Summer 2013: 1101+. General OneFile. Web. 30 Jan. 2014.
Lavelle, Marianne. “Fracking For Methane.” National Geographic Magazine Dec. 2012: [90]+. Natural Geographic Virtual Library. Web. 1 Feb. 2014.
Lovett, Richard A. “Study Revises Estimate Of Methane Leaks From US Gas Fields.” Nature 16 Sept. 2013. Nature News. Web. 2 Feb. 2014.
McKenzie, Lisa M., Witter Roxana Z., Newman, Lee S., and Adgate, John L. “Human Health Risk Assessment Of Air Emissions From Development Of Unconventional Natural Gas Resources.” Science of the Total Environment 424 (2012): 79-87. Web. 5 Feb. 2014.
Oldham, Jennifer. “Colorado First State To Clamp Down On Fracking Methane Pollution” Bloomberg Sustainability 23 Feb. 2014. Web. 3 March. 2014.
“Putting The Heat On Gas.” Environews 115:2. Feb. 2007. Environmental Health Perspectives. Web. 14 Feb. 2014.
Split Estate. Dir. Debra Anderson. Red Rock Pictures, 2009. Film.
State Impact Pennsylvania. “How Much Water Does It Take To Frack A Well?” NPR 12 March 2013. Web. 4 Feb. 2014.
Tollefson, Jeff. “Secrets Of Fracking Fluids Pave Way For Cleaner Recipe.” Nature 12 Sept. 2013: 146-147. Web. 2 Feb. 2014.
United States Environmental Protection Agency. “Regulatory Impact Analysis: Final New Source Performance Standards and Amendments To The National Emission Standards For Hazardous Air Pollutants For The Oil And Natural Gas Industry.” United States Environmental Protection Agency. EPA. Apr. 2012. Web. 29 Jan. 2014.
University of Colorado Denver. “Air Emissions Near Fracking Sites May Pose Health Risk Study Shows; Sites Contain Hydrocarbons Including Benzene.” ScienceDaily. 19 March 2012. Web. 3 Feb. 2014.
U.S. Energy Information Administration. U.S. Energy Information Administration. EIA, 2014. Web. 29 Jan. 2014.

 

 

 

 

 

 

 

 

 

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An Open Letter to Ann Coulter

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An Open Letter to Ann Coulter.

THANK YOU John Franklin Stephens for your wonderful heartfelt letter!!

Please take the time to learn more and educate others by going to http://www.r-word.org/

Emotional Chords and How We Play Them

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We all have emotions.  Happy, sad, angry, miffed, excited…all emotions.  We feel emotions in different situations, around different people and in different ways.  Sometimes it purely depends on the situation as to how you will react emotion wise, other times it depends on the day.  Example:  That movie or commercial that always pulls at your heart-strings–sometimes when you watch it you feel that emotional connection and respond by really thinking about the theme and acknowledging it, other times you see it and end up bawling for 15 minutes (and no, not the cute cry…the ugly cry, snot and all).  How we chose to process those emotions is where things sometimes get a little tricky.

The following is an emotion wheel that I thought would be fun to use pictures of our dog Doc showing some of the different emotions.  Pets are always great at helping people regulate their own emotions and studies have shown that pets are also great therapy.

 

Doc emotions through pictures.

When something happens in your life that does strike an emotional chord, learning how to react can be a real challenge, we have to learn how to play those emotional chords.  Yesterday a friend of mines young son was at school and injured himself during gym by running into the corner of a wall.  Joe’s injury required that he get 5 stitches in his temple area.  Joe did not cry, nor did his mother, yet when she contacted me about his injury she explained how hard it was for her to stay strong and not to cry so that Joe would be able to stay brave.  It is hard seeing someone you love hurt or in pain and in some situations the best thing that you can do is play your own emotional chords very softly so that the other person’s emotions do not escalate.  My friend did a perfect job keeping her own emotions in-check because they helped her son stay calm.  Later in the evening when Joe’s father arrived at home Joe showed that he had a great sense of humor about the injury by jokingly telling his dad that “he took on the whole class” and that the cut was all he got out of it 🙂

Part of our way of dealing with our own emotions depends on how we chose to look at life.  If you look at life and think that the world is out to get you and that life in general sucks, you emotions will also portray that.  If you try to stay upbeat and positive, even when life hands you the occasional lemon, your emotions will portray that.

Our emotions and moods also rub off on those around us…or other people’s emotions can rub off on us, sometimes for the good, sometimes for the bad.  I have one friend that stands out as always being happy (well, 98% of the time at least).  He has a great sense of humor and loves to make other people laugh and have fun.  If you are in a funk of a mood that day, within just a few minutes around him your entire day will brighten and your emotions will be uplifted.  A smile and a laugh really help in keeping emotions in-check.  On the other hand I have a friend who is always a “Debbie-Downer” she is either mad, angry, ticked-off or irritated all of the time…gosh, imagine how much stress that puts on your body to be feeling those emotions all of the time.!?  Even when something super positive happens in her life, rather than being happy and excited that it will happen, she choses to look at it and say “well, it wont last.”  Your life and emotions all come down to your own choices.  Chose to be happy, chose to be sad…it is all up to you.  Yes, sometimes people are actually not able to control their own emotions which can lead to depression and other health issues, but counseling & some medications (depending on each individual situation) can really help balance out the different emotions.

Years ago I had a friend that would call me in tears at least three times a week and tell me the horrible things her then boyfriend (now husband) would say to her when they were fighting or arguing.  After a few months of this I finally stopped her in the middle of one of her venting sessions and told her that the next time she called me she needed to tell me at least 3 positive things that he said or done for her before she started telling me about all of the negative things.  This made her stop and actually look at all of the positive things that he said and did, which helped her not focus on the negative things as much.  A few months later their arguing and fighting had lessened and their communication had opened.  After one of their arguments where he had said something horrible to her she finally asked him why he says such mean things to her when they fight and his answer was “you hurt my feelings so I just wanted to say the meanest thing I could think of so your feelings would hurt too.”  This made her realize that there were two sets of emotions in the relationship, and when she only focused on hers and he only focused on his their relationship sucked, but when they took the little time to focus on each others emotions their relationship became much stronger.

This leads me to think of a variety of questions, that hopefully also make you think:

Have you ever said something to just purposely hurt someone elses feelings?

How often do you stop to think about how your emotions affect the people around you?

Do you let other people’s emotions rub off on you?

How do you stay positive in a negative situation?

How do you stay strong when your emotions are tested?

How often do you just stop to think about other people’s emotions?

On days when you are sad have you found anything that helps make you feel emotionally better?  An emotional outlet that works for you?  Reading, baking, exercise, pet therapy?

How do you choose to play your emotions songs?

Do you find that little things often times “get” to you?  If so, how do you deal with them?

If you could choose three negative emotions to work on how you react to them, what would they be?

If you could choose three positive emotions to use more and make stronger in your daily life, what would they be?

Have you ever been so emotional that you have said or done something you later regret?

Have you ever transferred your emotions about a situation or about yourself onto someone else?  Example:  You are mad because you got in a car accident and you yell at the other driver, a few days later you realize that it was your own actions that caused the accident, so really the person you were mad at was yourself, yet you took it out on the other driver.

Have you ever let your own emotions hold you back in life?

Do you help others when they are on an emotional low?

Are their people in your life that you can look at and say “Susie is always happy” or “Jake is just a downer”?  How do you let their examples mold the emotions in your life?

As you have aged have you become better at controlling your own emotions?

Do you think that television is affecting the emotions of generations of young people?  Does seeing people get angry, scream, swear and turn a table over teach young people negative emotions or negative ways of dealing with their emotions?

Who are the three people in your life that you admire the most for their emotions and emotional support?

 

 

 

 

Sanfilippo Syndrome

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***Please note:  I am not a doctor.  I am not a scientist.  I am just someone who has had the privilege of working with a wonderful young lady with Sanfilippo syndrome and wanted to share some information.  There is much more information about Sanfilippo Syndrome out there, I just shared a few facts, so take the time to research more and educate yourself and others.***

Majority of people go through life and never even here the term “Sanfilippo syndrome” and if they do they rarely ask what it is. 

We all  know about cancer, Down syndrome, depression, erectile dysfunction, cerebral palsy, irritable bowel, etc from school, television (commercials and shows), and maybe even from some real life contact, yet we have never seen a commercial about Sanfilippo syndrome.  There are countless diseases out there and it is impossible to be educated on every one of them, but I want to take this opportunity to share some information about Sanfilippo syndrome…a little bit of knowledge goes a long way.

Sanfilippo syndrome is also known as MPS III and is a mucopolysaccharide disease (also refered to as glycosaminoglycans).   What is mucopolysaccharide?  Mucopolysaccharides are the  long chains of sugar molecules our bodies use to help  build connective tissues in the body.  Now lets take the time and just break that huge word down: 

muco:  refers to the thick almost jellyish consistancy of the molecules.

poly:  many

saccharide:  a sugar molecule…sound familiar, think saccharin which was discovered in 1879 and is an artificial       sweetener that can be found in candy, drinks and even our toothpaste.

Children who have MPS III/Sanfilippo syndrome are missing the enzyme heparan sulfate, which is vital in breaking down the used sugars or mucopolysaccharides. The mucopolysaccharides that are left and not broken down remain stored in the bodies cells causing progressive damage. 

Okay, now we technically know what mucopolysaccharide is lets learn about its history and how it affects the individuals who have it.

History in brief:  Dr. Sylvester Sanfilippo (retired)  is a pediatrician from Edina, MN.  In the early 1960’s Dr. Sanfilippo and his colleagues began a comprehensive study of children with mucopolysaccharide storage disease and in 1963 he presented the results of their study at the annual meeting of the American Pediatric Society, publishing the report of their findings  later that same year.  Essentially Dr. Sylvester Sanfilippo was one of the first doctors in the United States to research and describe the disease.

Statistics:  1 in 70,000 babies are born with MPS III…rough comparision 1 in 691 babies are born with Down syndrome

                          There are 4 different types of MPS III: A, B, C and D (aka four different enzyme deficiencies).

                          Symptoms usually do not appear until after the first year of life.  Many children are diagnosed between       the ages of  2 and 6 years old.      

                          Children with Sanfilippo syndrome will be below average in height, have full lips, heavy eyebrows, stiff joints, difficulty sleeping, problems walking and behavioral issues to name a few traits.

                           THERE IS NO CURE at this point in time.  The FDA has approved Enzyme replacement therapy, but in studies it has not shown to be effective in MPS III.  Research is ongoing and getting the word out to help with funding is vital.

                          Life expectancy of individuals with San Filippo syndrome is currently between 14-20 years of age.

                          Children with Sanfilippo syndrome (most) will be very active and have some difficult behaviors.  As they age they will slow down and start to become unsteady on their feet, often falling and eventually digressing to the point of immobility and having to use a wheelchair.

                          MPS III is an inherited disease caused by a recessive gene also called autosomal  recessive trait which means that both parents passed on the recessive gene causing the disease.

                           As the disease progresses children will lose their ability to walk, eat and speak.

                           Sanfilippo syndrome is fatal.

Some sites with more information & people who can help answer questions and who are living with children with Sanfilippo syndrome:

http://www.mpssociety.org/

http://www.mpssociety.org.au/

http://www.oliviaswish.com/html/mps-sanfilippo.htm

http://www.myfoxny.com/dpp/health/new-york-children-cope-with-rare-deadly-disorder-20101011

http://www.facebook.com/pages/Emilys-Dance-our-babys-life-with-San-Filippo-Syndrome/119166221467136?sk=info

http://www.facebook.com/pages/Emilys-Dance-our-babys-life-with-San-Filippo-Syndrome/119166221467136?sk=info#!/PrayingforLucas?sk=info

Please take the time to learn more about MPS III/Sanfilippo Syndrome and spread your knowledge by helping educate others.  MPS III is fatal and there is no cure at this point in time, but with ongoing research there will hopefully be a treatment or a cure in the near future.  Funding for research is necessary and there are many different ways of helping, you can donate directly to the MPS Society, check in your local community to see if they have any MPS walk/runs or other fundraisers happening or even organize a fundraiser of your own. 

Take the time to spread the word, share the knowledge and help find a cure.

Kathy Anderson---proud vocal parent with a daughter who has MPS III.