Sharjah City for Humanitarian Services (SCHS), a non-profit organization located in the United Arab Emirates celebrates World Down Syndrome Day on the 21st of March every year.
This date (21/3) is symbolic for the 3 copies of chromosome 21, unique to people with Down Syndrome. The aim of the World Down Syndrome Day celebration is to promote awareness, understanding, seek international support, and to achieve dignity, equal rights, and a better life for people with Down Syndrome globally.
SCHS's Al Wafaa School for Developmental Training organized two lectures by Dr. Latifah Rashed, Nutritionist at Al Qasimi Hospital, and Dr. Eman Kashef, a Social Worker from Egypt, at Sharjah Supreme Family Council on Monday, March 21st.
Mrs. Mona Abdel Kareem, Head of SCHS's Al Wafaa School for Developmental Training, introduced lecturers to the audience. In her introduction, Mrs. Mona Abdel Kareem emphasized that, “Actions speak louder than words. Therefore, all institutes should work together in order to improve the lives of people with Down Syndrome".
Dr. Latifah began the lecture by stating that genes that obtain an extra copy of chromosome 21 are responsible for all characteristics associated with Down Syndrome. Normally, each human cell contains 23 pairs of different chromosomes. Each chromosome carries genes, which are needed for proper development and maintenance of our bodies. At conception, an individual inherits 23 chromosomes from the mother (through the egg cell) and 23 chromosomes from the father (through the sperm cell). However, sometimes a person inherits an extra chromosome from one of the parents. In Down Syndrome, an individual most often inherits two copies of chromosome 21 from the mother and one chromosome 21 from the father for a total of three chromosomes. Down Syndrome is caused by the inheritance of three chromosomes 21, the disorder is also called trisomy 21. About 95% of individuals with Down Syndrome inherit an entire extra chromosome 21. The lecturer added that babies with Down Syndrome may be very challenging to breastfeed. It takes a great deal of patience to teach the baby to suck properly (and strongly) to obtain a milk ejection reflex and to stimulate your milk supply. For these babies, it is recommended that you begin by hand-expressing your breast to start the milk flow and hold the breast firmly so that the nipple doesn't slip out of the baby's mouth. It is also critical that you give good support to the head, jaw, and body of a baby with Down Syndrome, as they display general body hypotonia, or low-tone. If you prop the baby firmly with a pillow in your lap or use a sling baby carrier, you will have a hand available to hold the baby's jaw and your breast. It may take a few days to familiarize yourself to this technique, but once you've got a position that you're both comfortable with, stick with it!
Dr. Latifah concluded the lecture by saying that children with Down Syndrome are more likely than their unaffected siblings to have higher levels of a hormone associated with obesity, according to pediatric researchers. The hormone, leptin, may contribute to the known higher risk of obesity among children and adults with Down Syndrome. Therefore, parents should pay particular attention to their nutrition and health.
In the second lecture, Dr. Eman said that for children and adults with Down Syndrome, social understanding is usually a strength, beginning with infancy. Many of the cues which indicate how someone is feeling are non-verbal, for example, tone of voice, facial expression and body posture, so that even when a child or adult does not understand all the spoken language being used in a social situation they are still able to pick up the main messages about feelings and behave in an appropriate way, despite the delays in their development of spoken language skills. This has led a number of authors to emphasize the agreeable social skills, empathy and social competence of most children and adults with Down Syndrome. They tend to have better social understanding and social behavior than other children with similar levels of cognitive and communication delay and this can help them to be successful in community activities and in an inclusive education.
Sharjah City for Humanitarian Services (SCHS) is a non-profit organization located in the United Arab Emirates who aims at providing education, advocacy, and independence for people with disabilities under the General Directorship of Sheikha Jameela bint Mohammed Al Qasimi. To know more about it, please visit http://http://www.schs.ae/
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