Section Editor: Prof. Talaat I. Farag
On World Down
Syndrome Day 2014,
Let’s Move Past the Challenges
By Dr. Ghassan Shahrour, MD
On this day
In 1959, Prof. Jerome Lejeune (Paris) and Prof. Patricia Jacobs (Edinburgh) independently reported the first cases with Trisomy 21 (Down Syndrome). Since 2012, March 21st has been observed by the United Nations (UN) as the World Down Syndrome Day (WDSD) and each year the collective voice of people with Down syndrome, their families, and those in their support community grows louder and louder.
March was chosen to symbolize a third copy of the 21stchromosome in children with Down syndrome (instead of two in ordinary people), the UN calls each year on 3/21 for all countries of the world to not only review their past year’s successes on behalf of children with Down syndrome, but also to continue to strive to overcome the challenges faced by families and children with Down syndrome.
The theme for 2014
March 21, 2014 marks the 9th anniversary of World Down Syndrome Day and the theme chosen for this year is: “Health and Wellbeing - Access and Equality for All”. At its core, this year's theme means that all people with Down syndrome have full rights to access healthcare on an equal basis with others without discrimination for the proper assessment of the specific health needs of the person.
Commitments to fulfill
On WDSD, we should continue to educate people that Down syndrome is a genetic condition - not an illness. While having Down syndrome does not mean a person is “unhealthy”, some with Down syndrome must strive throughout their lifetimes to overcome myriad health challenges. But regardless of these often continued challenges, they should enjoy access to healthcare on an equal basis with others in society and families with children with Down syndrome and their health care providers should have ready access to training and education to be able to best assist children with Down syndrome. We should also take this opportunity on WDSD to continue to highlight and remind health professionals which evidence-based health services are accessible, appropriate, and effective for children with Down syndrome.
In line with the basic needs for compliance with the UN convention for the rights of persons with disabilities signed and ratified by most countries of the world, both for- and non-profit organizations (regionally and globally) are challenged to exchange knowledge, experience, and lessons learned to support this year’s theme of “Health and Wellbeing - Access and Equality for All” to better meet the needs of children with Down syndrome and to help promote their rights to quality lives alongside their other members of society.
Studies show that Down syndrome can be detected during the first term of pregnancy and has an occurrence rate of 1 in 800 - 1000 births. For those with Down syndrome, the levels of mental retardation, emotional, and physical challenges differ greatly from one child to the next and thus results in varying abilities and needs for each child. This needs to be made clear to both the child's family and to their communities.
Together we make a tangible difference
In our part of the world, this world education day should serve as an occasion to celebrate our achievements in serving children with Down syndrome, supporting their parents, and addressing the humanitarian, ethical, and developmental challenges to develop more effective legislation and methods to help overcome them.
We should also take this opportunity to demonstrate to parents and families with members with Downs syndrome how much we care and support them. And lastly, we should take this opportunity to honor the many volunteers who work tirelessly to help promote the empowerment and advancement of children with Down syndrome to both better ensure their inclusion in our communities. Together, we can empower parents and especially the mothers who are the corner stone in the long process of rehabilitation and inclusion. Together, we can continue to raise the awareness of Down syndrome and learn how we can better support every member of our society.
Dr. Ghassan Shahrour is a medical doctor. He is a prolific writer on health, disability, Rehabilitation, humanitarian issues and Disarmament. He has coordinated the Arab Human Security Network for civil societies to protect civilians and enforce the law. Ghassan is a recipient of national and international awards, including Honorary International Star of Hope, Colombia and International HAMDAN award in Humanitarian Medical Services, UAE.
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