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FASD and Stigma… Consequences of admission of alcohol consumption

Fetal Alcohol Spectrum Disorders (FASD) is a range of complex conditions caused by alcohol consumption by mothers during their pregnancy. Exposure to alcohol can cause severe harm to the unborn fetus that ultimately leads to the major characteristics of FASD: growth retardation, unique craniofacial abnormalities and damage to the central nervous system [reviewed in (Liyanage et al., 2017)]. Alcohol consumption and its consequences on individuals, families and the society have lead it to be considered as a public health issue and social concern, in fact into a ‘moral panic’ in the 1980s (Armstrong et al., 2000).

Is it necessary to confirm the mother’s alcohol consumption?

Mothers’ admission of alcohol consumption during pregnancy is required for FASD diagnosis. However, no every pregnant woman is forthcoming about their drinking behaviors. I believe that the healthcare professionals should play a role in sensitively and empathically inquiring about the alcohol consumption by mothers, because guilt, blame or stigma associated with the situation may result in mothers not to disclose their alcohol consumption. Which in turn may have negative consequences and challenges in diagnosing the affected child’s condition as FASD. “Stigma can act as a barrier to acceptance, social interaction, health care or adoption,” says Eric Racine (Langelier, September 10, 2015) who published an article on the impact of stigma against FASD and mothers (Bell et al., 2016).

Why mothers are stigmatized for their admission of drinking?

Women who drink during pregnancy, as well as the mothers of children with FASD, are stigmatized (P. W. Corrigan et al., 2018). The nature of stigma described in association with the admission of alcohol consumption by biological mothers during pregnancy included taking personal responsibility for their child’s condition, shame, and guilt by their past behaviors. Media can also play a role in creating or facilitating this stigma for either sympathetically towards children with FASD or shaming the mothers. Some media programs showed sympathy towards the mothers of children with FASD (Eguiagaray et al., 2016). Nevertheless, the stigma comes with the endorsement of prevention of drinking during pregnancy or increasing public awareness and showing support for the families of children with FASD (P. W. Corrigan et al., 2018).

It is unfortunate that most biological mothers are often be blamed for admitting that they consumed alcohol, even though some women are not aware of their pregnancy status while they drank (Healthy Child Manitoba; Muggli et al., 2016). For example, a report by the Health Child Manitoba mentions that “In Manitoba, 14% of women report drinking alcohol before knowing they were pregnant” (Healthy Child Manitoba). In fact, many of the pregnant women stop drinking after they are aware of their pregnancy (Muggli et al., 2016). Unfortunately, the gestation time of alcohol exposure is a significant factor in FASD, that the exposure during the first trimester (most women are unaware of their pregnancy during this period) may cause severe damage to the fetus (Muggli et al., 2016).

What can we do to reduce stigma?

FASD is preventable by avoiding alcohol consumption, but if knowing or unknowingly a mother consumes alcohol, subjecting that person to stigma, blame and shame do not help the situation. Therefore, families, healthcare professionals, and the community should be educated to reduce the stigma around this issue. One article published in 2017 in the USA, suggested that mothers who admitted alcohol consumption while pregnant are highly stigmatized and discriminated in the society for their previous behavior (Patrick W. Corrigan et al., 2017). They suggest contact‐based stigma reduction and prevention strategies, over education‐based strategies. Healthcare professionals and society should encourage mothers to rise over the challenges of stigma for their actions, and practice openness (Eguiagaray et al., 2016).

Many FASD-associated organizations implement campaigns and programs to reduce and prevent stigma of the mothers and families of children with FASD. Examples are

(https://fasdlearningwithhope.wordpress.com/2016/04/04/stigma/ )

As human beings, we should be more responsible before blaming or shaming someone for their actions. Living with a child with FASD is difficult by its own. While public awareness of the drinking while pregnant and FASD is highly necessary, it should be carried out without stigmatizing women who drink, mothers and families of children with FASD and adult/youth with FASD.

Note: The ideas expressed in this blog are my own.

References

Armstrong, E. M., Abel, E. L. J. A., & alcoholism. (2000). Fetal alcohol syndrome: The origins of a moral panic. 35(3), 276-282.

Bell, E., Andrew, G., Di Pietro, N., Chudley, A. E., N. Reynolds, J., & Racine, E. (2016). It’s a shame! Stigma against fetal alcohol spectrum disorder: Examining the ethical implications for public health practices and policies. Public Health Ethics, 9(1), 65-77. doi:10.1093/phe/phv012

Corrigan, P. W., Lara, J. L., Shah, B. B., Mitchell, K. T., Simmes, D., & Jones, K. L. (2017). The public stigma of birth mothers of children with fetal alcohol spectrum disorders. Alcoholism Clinical & Experimental Research, 41(6), 1166-1173. doi:10.1111/acer.13381

Corrigan, P. W., Shah, B. B., Lara, J. L., Mitchell, K. T., Simmes, D., & Jones, K. L. (2018). Addressing the public health concerns of fetal alcohol spectrum disorder: Impact of stigma and health literacy. Drug & Alcohol Dependence, 185, 266-270. doi:10.1016/j.drugalcdep.2017.12.027

Eguiagaray, I., Scholz, B., & Giorgi, C. (2016). Sympathy, shame, and few solutions: News media portrayals of fetal alcohol spectrum disorders. Midwifery, 40, 49-54. doi:10.1016/j.midw.2016.06.002

Healthy Child Manitoba. Why do girls and women drink alcohol during pregnancy? Retrieved from Manitoba, Canada: https://www.gov.mb.ca/healthychild/fasd/whywomenandgirlsdrink.pdf

Langelier, J. (September 10, 2015). Stigma against fetal alcohol spectrum disorder. Retrieved from https://medicalxpress.com/news/2015-09-stigma-fetal-alcohol-spectrum-disorder.html

Liyanage, V. R., Curtis, K., Zachariah, R. M., Chudley, A. E., & Rastegar, M. (2017). Overview of the genetic basis and epigenetic mechanisms that contribute to fasd pathobiology. Current Topics in Medicinal Chemistry, 17(7), 808-828. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/27086780

Muggli, E., O’Leary, C., Donath, S., Orsini, F., Forster, D., Anderson, P. J., Lewis, S., Nagle, C., Craig, J. M., Elliott, E., & Halliday, J. (2016). “Did you ever drink more?” a detailed description of pregnant women’s drinking patterns. BMC Public Health, 16, 683. doi:10.1186/s12889-016-3354-9

Tutorial 2: How to modify Journal name or Abbreviations in Endnote

It is important to have consistent Journal Name (either full name or specific abbreviation) format throughout your report of publication. When we export citations from Google Scholar, Journal websites or enter manually, the journal name format may not be the same in all cases. Therefore, authors should be able to edit the Journal name or more accurately called ‘Journals Term’ in EndNote. Today’s tutorial is how this can be done using a few simple steps as illustrated in the powerpoint here.

Powerpoint presentation: T2_Having consistent Journal name format in EndNote citation

If you have no roof over your head… have no food to eat… have no clothes to wear… Let’s catch up on homelessness in Canada

Everybody deserves food, place to sleep, treatments for illnesses, and someplace to call home.

Unfortunately, due to the rapidly changing economic status, unaffordable housing situations and lack of support or lack of access to support, Canada is a shelter for thousands of ‘homeless’. The following infographic from ‘The State of Homelessness in Canada 2016’ (Stephen Gaetz et al., 2016) briefly represent the big picture of homelessness in Canada.

Homeless rep

Figure source: (Stephen Gaetz et al., 2016) Page 5

Homelessness comes in hand with poor physical and mental health issues caused by poverty, lack of job opportunities, discrimination, marginalization, neglect, stigma, abuse, stress, addictions, and violence among many other factors (Kidd et al., 2018). The most vulnerable populations for homelessness in Canada are youth, veterans and Indigenous people, LGBTQ2S, immigrants or refugees, and visible minorities (Stephen  Gaetz et al., 2016) suggesting the need for more diverse and strategic planning to address homelessness for each population, as their needs and circumstances may vary.

Additionally, managing homelessness costs billions of dollars annually. Therefore, local, provincial and national stakeholders including the Canadian Government and non-profit organizations have collaborated to end homelessness across Canada.

A few of the successful projects to support homeless individuals and work towards preventing and ending homelessness in Canada include

  1. Housing First (Gaetz et al., 2013)
  2. The 20,000 Homes Campaign (Canadian Alliance to End Homelessness, 2018)
  3. A Way Home (A Way Home coalition, 2018)
  4. The National Housing Strategy – A place to call home (placetocallhome.ca, 2017)

It is my kind request to you that contribute to prevent and end the homelessness in Canada. Imagine yourself without a home, food, clothes or support. Feed at least one person. Donate your usable clothes, food, and other necessary items for people who seek shelter in homeless shelters in your city. One person at a time or one meal at a time, we can contribute to this noble cause.

Note that the views and opinions expressed here are those of the VR Medical & Science Writers.

References

A Way Home coalition. (2018). Ending youth homelessness. A Way Home.  Retrieved from http://awayhome.ca/youth-homelessness-in-canada/ending-youth-homelessness/

Canadian Alliance to End Homelessness. (2018). The 20,000 homes campaign.   Retrieved from http://www.20khomes.ca/

Gaetz, S., Dej, E., Richter, T., & Redman, M. (2016). 4. Homelessness and diversity: Addressing the needs of key populations The state of homelessness in canada 2016 (pp. 43-57). Canada.

Gaetz, S., Gulliver, T., Richter, T., & Redman, M. (2016). The state of homelessness in canada 2014: Canadian Homelessness Research Network.

Gaetz, S., Scott, F., & Gulliver, T. (2013). Housing first in canada: Supporting communities to end homelessness. Toronto,  Canada: Canada Homelessness Research Network.

Kidd, S., Slesnick, N., Frederick, T., Karabanow, J., & Gaetz, S. (2018). Mental health and addiction interventions for youth experiencing homelessness. Torontoa, Canada: Canadian Observatory on Homelessness Press.

placetocallhome.ca. (2017). Canada’s national housing strategy: A place to call home. Retrieved from https://www.placetocallhome.ca/pdfs/Canada-National-Housing-Strategy.pdf

 

FASD awareness: A multifaceted conundrum

Recently, I saw a post ““FASD Awareness” – what does that mean?” (Source: http://ow.ly/oRy830lLvkz). September is the FASD awareness month. So that is a valid question. This is my own view of that question. I believe the answer to this question to some extent is based on the definitions of ‘Awareness and intelligence’.

Google definitions for ‘awareness’ are
“knowledge or perception of a situation or fact or concern about and well-informed interest in a particular situation or development.”

On the other hand, What is intelligence? It’s “The ability to acquire and apply knowledge and skills.” (Google definitions).

Considering the difference and interconnected nature of awareness and intelligence, I believe we need to raise both the knowledge, and the ways to act on that knowledge. We need to raise awareness and intelligence through proper education programs not only to be aware but ability to act on that knowledge.

Alcohol consumption is harmful. It’s no secret anyone. But does anyone act intelligently on that knowledge and awareness? I think it’s a big fat “NO”. I have three questions to ask from all FASD-related professionals, community and other interested parties.

1. What is missing between awareness and intelligence in the case of FASD?

2. Who should be aware of FASD and how do we teach them to act properly?

3. And even if they have both the awareness and the intelligence, does it always prevent occurring FASD?

***First of all, FASD as the name implies is a spectrum of complex disorders with multifaceted aetiology. Whether a baby is born with FASD is determined by multitude of factors that are not limited to genetics, epigenetics (beyond genetics such as DNA methylation), environment (mother’s womb is the immediate environment for a fetus), time during the pregnancy (which trimester), amount of alcohol consumed, types of alcohol, how many times alcohol was consumed, then and the list goes on…. So acting intelligently on the fact that alcohol consumption may harm the baby may not be 100% successful. Yet prevention is much better than suffering, isn’t it?

***Another facet of awareness is once a child is diagnosed if having FASD, what can parents, family and caregivers do? Do they have the knowledge and capability to seek help, access to resources and continue treatment and intervention programs. Moreover, how the child is able to manage his/her health situation. Are they aware of what is happening? Are they able to access proper information and take charge or at least contribute to their own care?

***The Health care professionals and researchers who are trying to help these families by all means, are they aware of the emotional burden these families carry, and the impact of power imbalances occurung at hospitals, clinics, support programs and research. Even when they are aware,?how many of them are willing to act empathically and listen to the voices of patients and families?

***Another significant facet I see as awareness is the ‘social awareness of FASD’ as a ‘disability’ and development of stigma.

Collectively, main points that people, parents, patients, caregivers, healthcare professionals, researchers and community should be ‘aware’ of and ‘act upon’ in my opinion are:

• What is FASD?

• What are the myths and truths about alcohol consumption and FASD

• How to prevent FASD?

• Alcohol limits, damage done by alcohol to both the mother and the fetus

• What should you do if your child has FASD?

• How can you communicate with FASD patients

• What is the life of FASD patients and families look like?

• What are their actual needs?

• How should researchers and healthcare professionals communicate with them to provide best care and support ?

• How to engage FASD patients and families in treatments, intervention, education programs or research?

• How can we reduce the stigma around FASD?

• How do we empower FASD patients to live a normal life?

There are many research and support programs all around the world have found answers to many of the aforementioned questions. But considering the stigma, life challenges and many other issues still ongoing, it appears we are still missing something in our awareness concepts.

Please provide your thoughts and every little bit of knowledge will help to prevent FASD occurance and help the patients and their families.

Vichy Liyanage

Epigenetics 1: RNA methylation

What do you know about RNA methylation?

We all have heard of DNA methylation, different types of methyl marks such as 5mC and 5hmC and their significance in numerous biological processes.

So are you interested in knowing about RNA methylation and it’s significance?

“Role of RNA Methylation and Non-Coding RNAs in Pathobiology of Autism Spectrum Disorders”

Liyanage 2016, Biomedical Sciences

This article was written by me in 2016. Here I describe how RNA gets methylated and whether RNA methylation and noncoding RNAs such as microRNAs play any roles in Autism Spectrum Disorders. The PDF for the article can be downloaded using the link below

Liyanage 2016

Figure 1. RNA methylation

Wait for more interesting articles on Epigenetics….

Other reading materials:

Learn more about the latest updates on RNA methylation from these articles.

  1. Pan et al 2018
  2. Engel et al 2018
  3. Darnell et al 2018

Tutorial 1: How to export citations from Google Scholar

Many of the students and researchers sometimes struggle with manually writing the citations or entering the citation information to their references managing software such as EndNote. There are many ways you can easily download (export) the citations directly into EndNote.

  1. Export from Google Scholar https://scholar.google.ca/
  2. Export from the journal website
  3. If you are affiliated to a University or a Research Institution, their library access website also provide links for exporting citations
  4. Using PubMed ID (PMID), PubMed Central (PMCID) in the EndNote search section
  5. Entering author, year, title information in the EndNote search section

Today I am outlining the simple process of exporting citations from Google Scholar.

Tutorial 1: T1_How to export citations from Google Scholar

Next day, we will discuss the other methods mentioned above.

Thank you.

Vichy

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