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FASD - an invisible problem?

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Lauri Beekmann

on 4 November 2013

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Transcript of FASD - an invisible problem?

Invisible harm of alcohol use
Lauri Beekmann
Secretary General
People have used different drugs for thousands of years. Alcohol has been one of those substances and in recent centuries it has become the most used drug of all. Because most people in the western world drink alcohol the harm that is associated with drinking is the highest comapred to any other drug.
In 2010 British scientists listed different drugs according to their harm. Substances were rated based on two categories: what is the influence to the user and how big is harm to people around them and to the society at large. It came a bit a surprise to many that alcohol was placed to number 1 position.
Too often people see alcohol problem only in two main areas:
- alcoholism, which comes as a result of a longterm alcohol abuse
- and drink driving
There is no doubt that drink driving accidents are terrible and any society does right if it has 0 tolerance towards that kind of behaviour, but in the overall picture of alcohol related harm this is just a fraction of accounted harm.
According to Estonian Road Administration there were 11 casualties in 2012 associated with drunken driver.
At the same time there is over 1500 alcohol related deaths in Estonia with a population number of 1.3 million. Saying that I dont wish to undermine the seriousness of drink driving problem. We can see how important here has been both prevention and police work. But these numbers do say one important fact - majority of alcohol related harm does´nt reach our news.
What about alcoholism? Here we see a problem as well. Of course alcoholism is a big issue and far too many members of our society is struggling with that. But if we limit alcohol problem with alcoholism, we will never understand the full scope of it and we cant find the best solutions to solve it.
The problem is not only in alcoholism, but in intoxication. Drinking only once to the level where person looses control, might have irreversible consequences. And exactly that makes alcohol very different compared to many other drugs.
But lets come back to the big picture, only to dive in to another detail which shows how big and how often ignored alcohol problem really is.
The biggest argument demanding governemtnal intervention is alcohol´s harm to others. So called "passive drinking". This passive drinking becomes very real when we look at one specific issues, that in my mind is a corner stone of the whole concept. harm that is caused to children who have´nt been even born yet.
Fetal Alcohol Syndrome (FAS) is the first diagnosable condition of FASD that was discovered. In 1973 by two dysmorphologists, Drs. Kenneth Lyons Jones and David Weyhe Smith of the University of Washington Medical School in Seattle, United States. Two doctors discovered how alcohol may cause untreatable problems if the fetus is exposed to alcohol.
Fetal Alcohol Spectrum Disorders (FASD) is an umbrella term which describes a continuum of permanent birth defects caused by maternal consumption of alcohol during pregnancy, which includes, but is not limited to fetal alcohol syndrome (FAS). There is no known safe amount of alcohol or safe time to drink alcohol during pregnancy.
These effects may include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications. People with FAS might have abnormal facial features, growth problems, and central nervous system (CNS) problems. People with FAS can have problems with learning, memory, attention span, communication, vision, or hearing. They might have a mix of these problems. People with FAS often have a hard time in school and difficulty in social situations.
FAS is just a tip of the iceberg. Fetal Alcohol Spectrum Disorders (FASD) is an umbrella term describing different levels and effects of the harm caused by prenatal alcohol exposure.
# Fetal Alcohol Syndrome (FAS)
# Partial Fetal Alcohol Syndrome (PFAS)
# Alcohol-Related Neurodevelopmental Disorder (ARND)
# Alcohol-Related Birth Defects (ARBD)
# Fetal Alcohol Effects (FAE)
How big is this problem? What is the prevalence?
As we have only limited amount of data from a limited amount of reserach, there is no official answer to this question. Best guess is that about 1% of people in the western world is affected by FASD-s. FAS, the most severe expression of FASD, is estimated to affet around 1-3 children out of 1000 births.
This is area which is researched rather strongly and new data emerges all the time. This information suggests that these "official" numbers are underestimating the problem.
Edmonton, Canada, hosted this September first international FASD prevention conference that brought together over 700 participants from 35 countries. Different leading researchers explained that estimations that we have used until now are too hopeful and diminishing this problems true extent.
Recent estimates are that, in countries where drinking among women of childbearing age is common, 2 to 5 percent of all children have FASD. Rates of FASD have been reported to exceed 20 percent in some communities where heavy drinking during pregnancy occurs frequently. FASD is a condition of epidemic proportions in some populations. This is repeated also by dr Philip May.
With that FAS is the leading known cause of mental retardation in the western hemisphere. It is important to remind that this is 100% preventable harm.
FASD is more prevalent than Down Syndrome, Cerebral Palsy, Sudden infant death syndrome, Cystic Fibrosis, and Spina Bifida combined.
What about my own country - Estonia?
Last month Estonian Institute for Health Development published Alcohol Yearbook, where different alcohol related diseases in 2012 is explained. FAS is also mentioned.
5 cases in 2012.
But what if we calculate with these numbers that FASD researchers are suggesting? What could the real situation in Estonia look like? I cant see that there is any reason WHY these numbers should apply to Estonia, which is among the top drinking countries in the world.
So, let´s try this mathematics out.
During the last 10 years in Estonia, we have seen around 15000 births in average. As you remember the most conservative estimation for FAS prevalence was 1-3 cases per 1000 births. That would make 15-45 FAS diagnosed children every year.
The whole FASD was estimated to affect around 1% of children - 1 child out of 100. In Estonian numbers that would make 150 children every year.
What about these latest numbers? For FAS 2-7 cases per 1000 meaning in Estonia 30-105 FAS children. And 2-7% for FASD - in Estonia 300-1050 children every year who have been harmed by prenatal alcohol exposure.
Alcohol related birth defects are caused of course for only one reason - when pregnant woman drinks alcohol. And though science says no amount is proven to be harmless, it is clear that with amounts the risk also grows. At the same time it is important to remember that these smaller amounts that does´nt seem to have any visible effet to an adult, might harm a small fetus and development of different organs.
Do we have any reason to be afraid that women continue drinking while pregnant?
We don´t have data for Estonia but in September a study was released which showed that for instance in Ireland 80% continue drinking also while pregnant. At the same time another study from Norway showed that in that Nordic country 1 out of 10 women was drinking while pregnant.
I´m not a scientist. I´m not a researcher. I´m a concerned citizen with a reading ability and some mathematical skills. I´m not claiming that FASD prevalence could be found out like that. But it seems that instead of 5 cases we might have closer to 105.
Why is it important that FAS is properly diagnosed and we would know the real size of the problem?
If these mathematical calculations are even close to truth it is clear that we have a big problem.
Without proper diagnosis these children
- dont receive care they need
- dont receive education they need
- receive unfair treatment by the legal system.
And the society never accepts the real scope of the problem to be able to prevent it.
In 2011 a study was released in Canada (Popova et al) that claimed that for FASD person it is 19 times more likely to end up in a prison system.
One year earlier in 2010 Canadian Bar Association adopted a resolution asking government to deal with FASD issue in legal justice system, so that these people would be treated as fair as possible.
Without a diagnoses these are just problematic children.
Proper diagnoses and understanding explains both to these children as well as to their parents that they are not a problem. They HAVE a problem which has to be treated correctly.
Looking back to the big picture of alcohol related harm, this is just one additional argument demanding for governments intervention.
Let´s just take this one small aspect - if you buy an alcoholic product do you find any information about its teratogenic effect and that all pregnant women should avoid drinking?

It is a huge problem. For so many children life is ruined already before their birth. But there is extremely easy solution to avoid it - just don´t drink!
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