A down syndrome diagnosis can bring certain challenges, but advances in medical science, public attitudes and education have. Foundations understanding a down syndrome diagnosis is an accurate, balanced and uptodate booklet for use when delivering a diagnosis of down syndrome. Aucd understanding a down syndrome diagnosis booklet. Foundations understanding a down syndrome diagnosis booklet that is printed and distributed by lettercase.
Did you find what you were looking for on this webpage. Foundation, and more than 50,000 copies have been distributed throughout the us. Understanding a jacobsen syndrome diagnosis bifold. Understanding a down syndrome diagnosis is for expectant parents immediately after receiving a confirmed prenatal diagnosis or results indicating high chances for down syndrome.
Understanding a down syndrome diagnosis by stephanie hall meredith. Understanding a down syndrome diagnosis is often described as a lifeline for families learning about a diagnosis, and i believe, as did my mother, that expectant parents need that support and information right away. Attitudes of mothers of children with down syndrome. Understanding a down syndrome diagnosis resources for families and providers about down syndrome resources for both families and providers offering information about down syndrome are listed below. Understanding a down syndrome diagnosis is an accurate, balanced and uptodate booklet for use when delivering a diagnosis of down syndrome. The national down syndrome society and lettercase have joined forces to produce understanding a down syndrome diagnosis updated in 2017 and available online for free. Foundation first call committee as the gold standard for prenatal information about down syndrome. To learn more about lettercase, which is part of the national center for prenatal and postnatal down syndrome resource at the university of kentuckys human development institute, click here. This booklet offers basic information about down syndrome. New booklet out for expectant parents of child with down. Understanding a down syndrome diagnosis is often described as a lifeline for. In 2009, the booklet was selected by the prestigious joseph p. Asking women about their knowledge, opinions, resources, and information needs on the topic of ds is an important precursor to develop effective strategies for education. It looks like the producers intend that the booklet be distributed to patients by their obstetricians after a prenatal test suggests that the fetus has down syndrome.
Understanding a down syndrome diagnosis booklet arup consult. How do we order the understanding a down syndrome diagnosis booklet, and other resource materials. Hdis national center for prenatal and postnatal resources. The diagnostic procedures available for prenatal diagnosis of down syndrome are chorionic villus sampling cvs and amniocentesis. The booklet is intended for pregnant women first finding out about a prenatal down syndrome diagnosis.
Understanding a down syndrome diagnosis translations lettercases booklet, understanding a down syndrome diagnosis. Most of these screening tests involve a blood test and an ultrasound sonogram. Sue levine occasionally gets remunerated from down syndrome nonprofit. Offers the kennedy foundations understanding a down syndrome diagnosis booklet that was prepared with assistance by representatives of the national medical and down syndrome organizations.
Womens knowledge, attitudes, and beliefs about down. Expectant parents madison area down syndrome society. Understanding a down syndrome diagnosis is now available as a free digital book. Parents who have a child newly diagnosed with down syndrome can request a copy for free through lettercase or by emailing the washington state department of health. Celebrating people living with down syndrome this compilation of 56 encouraging and eyeopening short writings by a variety of authors across the globe celebrates the lives of people living with down syndrome. A booklet for parents who receive a prenatal diagnosis. Understanding a down syndrome diagnosis is a nationallyrecommended booklet that is administered by hdi a university center for excellence in developmental disabilities and owned by the joseph p. Understanding whats difficult about understanding a down. Im happy to share that last week we released a free, digital version of our booklet, understanding a down syndrome diagnosis. Findings from these studies are highlighted and presented in this booklet.
They do truly amazing work with outreach to physicians and expectant parents, and have recently released a spanishlanguage booklet. Open file for understanding a down syndrome diagnosis booklet feedback. There are two types of tests for down syndrome that can be performed before. Lettercase the national center for prenatal and postnatal.
Understanding a down syndrome diagnosis booklet compiled by the down syndrome consensus group with input from the national society of genetic counselors, the american college of medical genetics and genomics, the american college of obstetricians and gynecologists, the national down syndrome society, and the national down syndrome congress. Resources for women with a prenatal diagnosis of down. Family perspectives about down syndrome brian skotko. Doctors need to understand their patients when it comes to. Currently there are about 250,000 americans with the condition. Understanding a down syndrome diagnosis booklet available through kennedy foundation and kentuckys human development institute. Understanding a down syndrome diagnosis as part of our medically speaking. Undergoing prenatal screening and diagnostic testing for down syndrome is a very. National association for down syndrome multicultural. They are the ones who produce the outstanding books on understanding a down syndrome diagnosis. Understand your pediatric patients down syndrome diagnosis. Understanding a down syndrome diagnosis on apple books. Contact us to request your free copy and dsfcs welcome packet. The canadian down syndrome society has written this booklet in plain language to teach people with down syndrome about down syndrome.
Recently, the national down syndrome society and the national down syndrome congress announced the selection of a booklet understanding a prenatal down syndrome diagnosis as a gold standard. Understanding a down syndrome diagnosis washington post. For expectant parents immediately after receiving a confirmed prenatal diagnosis or results indicating high chances for down syndrome. These procedures, which carry up to a 1% risk of causing a spontaneous termination miscarriage, are nearly 100% accurate in diagnosing down syndrome. Massachusetts general hospital, down syndrome clinic director when expectant parents across the country receive a prenatal diagnosis, they consistently deserve to receive accurate and uptodate information about the condition. Some of these include, but are not limited to, and understanding a down syndrome diagnosis, available as a free ebooklet via, and the first call program provided by many local and state down syndrome groups. Understanding a down syndrome diagnosis this booklet presents information on available health and education services, common medical conditions for babies with down syndrome, information about pregnancy options, and helpful resources about the condition. Expectant parents down syndrome association of wisconsin. General audience 1 parentscaretakers of young children 1 format. Down syndrome resource materials for medical professionals and. Parenting my kid who has down syndrome isnt all rainbows. Finally, we have that information through the booklets created by lettercase.
Please understand that your emotional reactions are normal. Compiled by the down syndrome consensus group with input from the national society of genetic counselors, the american college of medical genetics and genomics, the american college of obstetricians and gynecologists, the national down syndrome. Medical providers and expectant parents can also view the booklet online at. This pamphlet will explain how breastfeeding can be a valuable and. Free booklet understanding a down syndrome diagnosis. What does a diagnosis of down syndrome mean to our family. The best resource for expectant parents receiving a diagnosis is the kennedy foundations diagnosis booklet, understanding a down syndrome diagnosis.
The booklet continues to be available in print and as a free digital download through the lettercase program at the university of kentuckys human development institute. Understanding a down syndrome diagnosis the arc of. A website with a resource directory for new and expectant parents learning about down syndrome. In september 2010, a group of influential and respected organizations completed input on a booklet, understanding a down syndrome diagnosis, which represents a consensus among. This free web app offers accurate, uptodate, and balanced information about down syndrome for medical providers and new and expectant parents. National booklet understanding a down syndrome diagnosis the 2011 edition of understanding a down syndrome diagnosis contains the latest medical and developmental information about people with down syndrome as well as local and national resources. Recently, members of the nsgc received a booklet called understanding a down syndrome diagnosis, full of lovely pictures of children with down syndrome and their families, accompanied by a factual but largely positive text according to some studies, siblings of children with down syndrome tend to be more compassionate and welladjusted than their peers.
To raise down syndrome awareness, get the information. Compiled by the down syndrome consensus group with input from the national society of genetic counselors, the american college of medical genetics and genomics, the american college of obstetricians and gynecologists, the national down syndrome society, and the national down syndrome congress. Over 25,000 copies of understanding a down syndrome diagnosis have been distributed nationwide since 2008. Down syndrome occurs within all racial, cultural and economic backgrounds. Ds4302 easyto understand information for families who receive a pre or post natal diagnosis of down syndrome in english and spanish. This booklet, printed in english and spanish, is endorsed by professional and advocacy organizations alike.
Fathers joy celebrating the blessing of children with. Foundations understanding a down syndrome diagnosis is an accurate, balanced, and uptodate booklet for use when delivering a diagnosis of down syndrome. Whilst in the earlier years those born with a heart condition did less well. Down syndrome resource materials for medical professionals. Understanding a down syndrome diagnosis an accurate, balanced, and uptodate booklet for use when delivering a diagnosis of down syndrome and is part of the national center for prenatal and postnatal resources at the university of kentuckys human development institute hdi. Receiving a diagnosis of down syndrome through prenatal testing can be unexpected, confusing, and difficult for many parents. Understanding implications of prenatal testing for down.
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