Understanding down syndrome creative health solutions. People with down syndrome have an extra chromosome that impacts how a person looks and their ability to think, learn, and reason. Diagnosis and management of down syndrome springerlink. Dual diagnosis 1 education 19 events 5 families and carers 109 finance 3 fundraising 26 general 22 having a voice 3 health 57 jobs 3 living the way you want 15 new parents 4 parliamentary 6 people with downs syndrome 24 prenatal 6 professionals 77 research 20 social care 10 supported living 4 training 3. Please understand that your emotional reactions are normal.
Our vision is to ensure families have unbiased and factually accurate diagnosis experiences, every time, through which families quickly know theyre not alone. We are continuously pursuing research opportunities and increasing awareness in medical. Down syndrome differential diagnoses medscape reference. Resources for expectant parents down syndrome alliance of.
However, with appropriate education, therapy, health care and social support, the majority of people with down syndrome can lead long, independent and fulfilling lives in our. Finally, we have that information through the booklets created by lettercase. Findings from these studies are highlighted and presented in this booklet. In 2009, the booklet was selected by the prestigious joseph p. Overview of prenatal screening and congenital cytogenetic abnormalities, section on trisomy 21 down syndrome and down syndrome. Down syndrome is caused by the presence of an extra third copy of chromosome 21 at the time of conception.
How do we order the understanding a down syndrome diagnosis booklet, and other resource materials. Attention deficit hyperactivity disorder in adults. Support miami valley down syndrome association mvdsa. 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. Better understanding of down syndrome buds navigate life. Did you find what you were looking for on this webpage. Down syndrome affiliates in action the seeds for the.
People with down syndrome often learn in different ways. The nationally recommended book for new and expectant parents learning about down syndrome has been recently updated with. Foundations understanding a down syndrome diagnosis is 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 down syndrome resources at the university of kentuckys human development institute hdi. Lettercase the national center for prenatal and postnatal. Children with down syndrome are found across all social, economic and racial backgrounds. This was a warmer book and was not as clinical as most of the the other books ive read. Down syndrome can usually nurse, and many can breastfeed successfully. How to deliver a down syndrome diagnosis better down. It provides an overview of down syndrome, explaining that it is diagnosed through prenatal testing, and discusses how expectant parents can work with obstetric medical providers and medical genetics professionals to understand the diagnosis and make plans.
Understanding whats difficult about understanding a down. Straight talk about mental retardation, down syndrome, and life down syndrome. Identifying evolving issues is the work of researchers at the telethon. Attitudes of mothers of children with down syndrome.
International mosaic down syndrome association mosaic. 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. Down syndrome is the commonest chromosomal disorder causing mild to moderate intellectual disability, yet it is one of the neglected disorder amongst practicing physicians. Oct 21, 2014 how to deliver a down syndrome diagnosis better too many parents have bad experiences from how their medical team delivered the diagnosis that their child has down syndrome. Foundations understanding a down syndrome diagnosis booklet that is printed and distributed by lettercase. 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. These programs also offer valuable resources for medical professionals delivering those diagnoses. How do we order the understanding a down syndrome diagnosis. Understanding a down syndrome diagnosis the arc of. Down syndrome facies transverse palmar crease hypotonia. Additional resources for understanding a down syndrome diagnosis. A guide for parents and professionals fine motor skills in children with down. You may learn a little slower, or you may find it hard to learn.
Most people with down syndrome learn things more slowly. Understanding a down syndrome diagnosis is often described as a lifeline for. News down syndrome affiliates in action affiliates. Understanding down syndrome down syndrome western australia. There is a greater chance of a child being born with down syndrome when the mother is over 40. This is another book that isnt specifically about down syndrome but is about general acceptance and understanding for children that can really help kids come together no matter what differences there are. Breastfeeding your baby with down syndrome this pamphlet will explain how breastfeeding can be a valuable and rewarding part of caring for your baby and contribute to your childs well being. And, like their siblings, many people with down syndrome graduate from high school, attend college, hold meaningful jobs, and may learn to drive. Understanding a down syndrome diagnosis is for expectant parents immediately after receiving a confirmed prenatal diagnosis or results indicating high chances for down syndrome.
How to deliver a down syndrome diagnosis better too many parents have bad experiences from how their medical team delivered the diagnosis that their child has down syndrome. Ds individuals are affected by these phenotypes to a variable extent thus understanding the cause of this variation is a key challenge. Better understanding of down syndrome buds offers support and encouragement to new parents of babies with down syndrome. This free web app offers accurate, uptodate, and balanced information about down syndrome for medical providers and new and expectant parents. Like all people, those with down syndrome have a variety of talents and abilities. Better understanding of down syndrome buds navigate. The canadian down syndrome society has written this booklet in plain language to teach people with down syndrome about down syndrome. Jul 12, 2011 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. A down syndrome diagnosis can be made during prenatal testing. 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. The nationally recommended book for new and expectant parents learning about down syndrome, understanding a down syndrome.
Jun 22, 2017 the nationally recommended book for new and expectant parents learning about down syndrome, understanding a down syndrome diagnosis, from the lettercase national center for prenatal and postnatal resources at the university of kentuckys human development institute, has been recently updated with unprecedented collaboration from leading experts across the nation to improve the diagnosis. Download down syndrome and you make canada a better place for people living with down syndrome. If you want to educate your childs school, bringing in some of these books can also be really great for teaching. 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.
Providing support for families and individuals whose life has been touched by mosaic down syndrome. In this case, the doctor may suspect that a baby has down syndrome based on the presence of possible characteristics of the condition. Mosaicism or mosaic down syndrome is diagnosed when there is a mixture of two. Ds4302 easyto understand information for families who receive a pre or post natal diagnosis of down syndrome in english and spanish. Epidemiology, pathogenesis, clinical features, course, assessment, and diagnosis. General issues related to management of adults with intellectual disability, and problems related to ds specifically, are discussed in detail separately. Down syndrome is a condition found in approximately 1 in every 700 to 900 births. Children with down syndrome when intervened early by speech therapy, physiotherapy and occupational therapy and given proper medical attention for different health issues, can have a better long term outcome as. All children with down syndrome should have an echocardiogram ultrasound of their heart in the. Open file for understanding a down syndrome diagnosis booklet feedback. Prenatal diagnosis down syndrome advocates in action nebraska.
Family functioning in families with a child with down syndrome. Down syndrome affiliates in action the seeds for the best ideas. The usual way in which mosaic down syndrome is discovered is through genetic testing of the babys blood. In down syndrome, mosaicism means that some cells of the body have trisomy 21, and some have the typical number of chromosomes. Subsequently, understanding a down syndrome diagnosis was evaluated in 2010 by the down syndrome consensus group, initiated by the university of south carolinas genetic. Download information about down syndrome for expectant parents. Understanding a down syndrome diagnosis this booklet, by lettercase, was prepared with assistance from the down syndrome. Research translation is a tool for empowering those who may not have a popular voice.
Down syndrome ds is one of the commonest disorders with huge medical and social cost. Many of these characteristics are found to some extent in the general population. The canadian down syndrome society has developed this resource for women who are considering having prenatal screening or they have recently learned of the possibility of their child having down syndrome and are seeking more information about down syndrome. Resources for expectant parents down syndrome alliance.
The exhibitors were able to distribute understanding a down syndrome diagnosis booklet, delivering a down syndrome diagnosis booklet, flyers, brighter tomorrows flyers, national down syndrome adoption network flyers, and other timely information such as articles on the latest in down syndrome research. Mar 30, 2011 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. Buds organizes educational and social opportunities for individuals with down syndrome and their families to encourage social and physical development. Understanding of down syndrome i am writing to express the disappointment of down syndrome australia and the community that we represent, of the lack of basic understanding about down syndrome shown by one of your senior staff during the recent hearing in. Understanding the implications of prenatal testing for. A community that supports the awareness of mosaic down syndrome via content publishing, sharing of resources and annual conferences. A good place to start is with the booklet understanding a down syndrome diagnosis, a source of information complied with input from the national society of genetic counselors, the american college of medical genetics, the american college of obstetricians and gynecologists, the national down syndrome society, and the national down syndrome. The most common form of down syndrome is known as trisomy 21, where an embryo has three copies of chromosome 21. Children with down syndrome when intervened early by speech therapy, physiotherapy and occupational therapy and given proper medical attention for different health issues, can have a better long term outcome as compared to. With the new year just beginning, we now look ahead to what can be expected for down syndrome prenatal testing in 2014. A physical examination checklist of 25 signs of downs syndrome was used to predict the presence of absence of 21trisomy in 291 individuals examined for suspected downs syndrome.
This booklet offers basic information about down syndrome. Understanding a down syndrome diagnosis is an accurate, balanced and uptodate booklet for use when delivering a diagnosis of down syndrome. The issues families confront need to be recognised and addressed by policy makers. Understanding of down syndrome i am writing to express the disappointment of down syndrome australia and the community that we represent, of the lack of basic understanding about down syndrome shown by one of your senior staff during the recent hearing in canberra regarding the inquiry on the auditors. The mission of dsdn is to connect, support, and provide accurate information for families with a down syndrome diagnosis. Down syndrome ds, or trisomy 21, is one of the most common causes of intellectual disability id and recent prevalence estimates suggest that there are 11. The first 18 months dvd or video early communication skills in children with down syndrome.
Dsdn sends your healthcare professional the following resources. Fortunately, research, guidelines, and online training exist on how best to deliver the diagnosis. A description of prenatal tests for down syndrome by len leshin, m. Ds is associated with number of phenotypes including congenital heart defects, leukemia, alzeihmers disease, hirschsprung disease etc.
Foundation first call committee as the gold standard for prenatal information about down syndrome. We know a new diagnosis can be quite a shock, and we want to point you to. Attitudes of mothers of children with down syndrome towards. This weeks posts so far have shared the top 5 blog posts from the past and the top developments in down syndrome prenatal testing in 20. A physical examination checklist of 25 signs of down s syndrome was used to predict the presence of absence of 21trisomy in 291 individuals examined for suspected downs 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. I put it in gift baskets for new moms that contact me who have recently had a child with down syndrome. It also provides detailed information on techniques to help you and your baby learn to breastfeed effectively. Understanding implications of prenatal testing for down syndrome. If you wish to breastfeed, consider speaking with a lactation breastfeeding specialist heart health children with down syndrome are also at increased risk for heart defects. What does a diagnosis of down syndrome mean to our family. Maybe you have a great memory and do not need to write things down to remember them.
We are the international mosaic down syndrome association. International mosaic down syndrome association about us. Updated understanding a down syndrome diagnosis book. Down syndrome is by far the most common and best known chromosomal disorder in humans and the most common cause of intellectual disability. Uk hdi updates understanding a down syndrome diagnosis book. Sep 15, 2009 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. The diagnosis of down syndrome is usually suspected after birth as a result of the babys appearance. Understanding implications of prenatal testing for down. 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. The nationally recommended book for new and expectant parents learning about down syndrome, understanding a down syndrome diagnosis, from the lettercase national center for prenatal and postnatal resources at the university of kentuckys human development institute, has been recently updated with unprecedented collaboration from leading experts across the nation to improve the. Understanding a down syndrome diagnosis washington post.
Find out the type, causes, and kinds of effects it can have. Aucd understanding a down syndrome diagnosis booklet. Oct 15, 20 down syndrome is the commonest chromosomal disorder causing mild to moderate intellectual disability, yet it is one of the neglected disorder amongst practicing physicians. Down syndrome resource materials for medical professionals and. Health care guidelines for individuals with down syndrome down syndrome preventative medical check list. National center for prenatal and postnatal down syndrome. Jun 10, 2015 i think its really hard to talk about and explain down syndrome sometimes, and books can be really good tools in helping your childs peers, as well as family and friends better understand down syndrome. One in every 691 babies in the united states is born with down syndrome, making. A diagnosis of down syndrome is confirmed with a special blood test. 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. Down syndrome is connected with a range of medical problems including increased risk of hearing and vision defects, heart abnormalities, infections and thyroid disorders. It is primarily caused by trisomy of chromosome 21 see the image below, which gives rise to multiple systemic complications as. Sep 14, 2009 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.
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