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Before you delve into the information on this page, it is extremely important that you watch this video. Most likely, everything you think you know about Down syndrome is based on stereotypes. Don’t believe us? Then it’s even more important that you watch this.
First, let’s explain the science behind Down syndrome. To understand Down syndrome, it is important to make sure you have a basic understanding of human reproduction. Men and women both have different sex cells. Men’s sex cells are called sperm cells, and they are stored in the epididymis, a portion of the testicles. Women’s sex cells are called egg cells, and they are created and stored in the ovaries. When a man ejaculates into a woman during sexual intercourse, his sperm cells “swim” to the woman’s egg cell. Most often, only 1 sperm cell makes it to and inside the egg cell. Once the sperm cell is inside the egg cell, the paired egg and sperm is called a zygote. This zygote slowly transforms into a baby. But how does it do that? Each sperm cell and each egg cell has chromosomes. Chromosomes are proteins that carry your genetic information. Genetic information is what decides your natural physical makeup. Maybe you have the same nose shape as your mom, or the same height as your dad. That’s because your parents passed down their genetic information to you through chromosomes. Each sperm cell and each egg cell have 23 single chromosomes. When a sperm cell and egg cell combine to form a zygote, there are 46 single chromosomes total. In the zygote, the 46 single chromosomes pair together to form 23 pairs of chromosomes. Sometimes, the 21st pair of chromosomes randomly turns into a triplet. This is referred to as Trisomy 21, “tri-” meaning 3, “-somy” meaning “body,” and “21” referring to the 21st chromosome (1). This is also called Down syndrome, named after John L. Down, the first person to discover the tripling of chromosome 21 (2). Of all of the chromosomal differences, Down syndrome is the most common (2). It is thought that every 1 in 700 babies is born with Down syndrome (2), but due to the high abortion rates of babies with Down syndrome, it is difficult to obtain an accurate number.
A lot of the information we have about Down syndrome is influenced by the results of discrimination and mistreatment of people with Down syndrome, a lack of value placed on the lives of people with Down syndrome, and writing off other disabilities and disorders as part of Down syndrome. We have checked our facts, and have had people with Down syndrome, their families, and their friends review them.
Down syndrome impacts people physically and mentally, but not in the ways you may think. It is important to know that not all characteristics we have listed apply to every person with Down syndrome, just the majority. When we refer to people with Down syndrome in general, we are referencing the majority of people with Down syndrome.
Short Stature: Shorter height than average.
Low Muscle Tone: To put it in simple terms, muscle tone is how strong your muscles are. People with Down syndrome naturally have low muscle tone, but through exercise this can easily be changed. Some people will tell you that Down syndrome causes people to have a flat back of the head, but that’s not true. What those people are recognizing is Positional Plagiocephaly. If a baby has low muscle tone and is placed on their back for long periods of time, it is harder for them to lift their head or roll over (5). This leads to them staying on their back, which then leads to the flattening of the back of their head (5). Their head can easily be shaped back by wearing a specific type of helmet (5). Many insurance companies in the United States will cover the cost of the helmet, and different organizations may help to raise funds or fully pay for the cost of the helmet.
Epicanthal Folds Around the Eyes: According to Dr. Kaneshiro, “An epicanthal fold is a skin fold of the upper eyelid covering the inner corner of the eye. It is often seen as a normal finding in very young children and is also common in people of Asiatic decent. An epicanthal fold can be an important diagnostic finding in conditions such as Down syndrome” (6).
Small Airways: A common finding in people with Down syndrome is a small airway. Some people with Down syndrome may have a small trachea, large tongue, narrow nasopharynx, and a small hard and soft palate (4). If you’re a medical professional, it is important to know how intubating someone with these characteristics may be different than typical intubation. Those differences can be found here.
Small Hard and Soft Palate: Some people with Down syndrome have a small hard and soft palate (4). When combined with a large tongue, people with Down syndrome may have a hard time keeping their tongue in their mouth, but that can easily be changed with at home speech exercises, or speech therapy if available. This is also what causes people with Down syndrome to have a specific tone to their voice.
Single Transverse Palmar Crease: If you look at the palm of your hand, you will see several large creases, possibly forming the shape of the letter “M.” Some people with Down syndrome only have one large crease across their hand (3).
Larger Space Between Big Toes: Some people with Down syndrome have a “Sandal Gap Deformity,” which is just a larger space than usual between their big toes and the rest of their toes (7).
It is a common stereotype that Down syndrome causes people to be unintelligent and incapable. That is completely incorrect. Just like people without any disabilities, intelligence and capability varies from person to person. Regardless of their intelligence and capability, each person is valuable, and can positively contribute to society. Some people with Down syndrome may take a longer time to process information, but they are still capable of processing and comprehending information. If you find yourself having to repeat something to someone with Down syndrome, this is why.
If you take a group of people with a common similarity and declare that they are unintelligent and incapable, and the world treats them that way, they will be unintelligent and incapable, but it will not be the fault of their common similarity, it will be the fault of how they are treated. This is what has happened to people with Down syndrome and people with disabilities in general. When treated as someone without Down syndrome would be by their family, society, school system, medical care providers, and government, people with Down syndrome can rise to their full mental and physical potential. They can graduate from high school, graduate from college, find careers, start businesses, get married, and more. Unfortunately, many people with Down syndrome still face intentional and unintentional discrimination and mistreatment. For example, most people with Down syndrome are never given the chance at an equal education to people without any disability. Because people with Down syndrome have a disability, they are sent to special education rooms instead. Special education rooms are the worst thing for people with Down syndrome. Almost all of these rooms do not focus on academics, rather they focus on “life skills,” or at least claim to. Some people with Down syndrome have reported being forced to clean their school and perform other tasks without pay as “life skills training.” Others have reported that their special education room was run like a daycare. They payed games, were taught the alphabet for the millionth time, and went on a weekly field trip each week to a local grocery store. Many people with Down syndrome are showing the world that people with Down syndrome are capable of obtaining an equal education. Just like they would if they did not have a disability, they learn their life skills at home and learn academics at school.
Having another disability along with Down syndrome can also impact a person with Down syndrome’s intelligence and capability. Some times, disabilities such as autism, are written off by medical professionals as just being part of Down syndrome. When other disabilities go unnoticed, the negative impacts they have on the people who have them are not confronted.
No matter what obstacles people with Down syndrome face, they can still learn. Like we said, many people with Down syndrome take longer than average to process information- they learn in a different way than most people, but this isn’t a bad thing. Everyone, including people without any disabilities, learns in different ways. The only difference between how you learned in school versus how someone with Down syndrome learns in school is that you were not labeled as unintelligent. You were not sent to a special room and kept from an education. Imagine what your life would be like if you had been?
This video is extremely important to watch. It proves that anyone- regardless of having a disability- can learn, and go on to do great things.
Professor Reuven Feuerstein developed a method that can teach anyone how to learn. If you watch the video, you will see several examples of people with Down syndrome pursuing higher education, finding careers, getting married, and more. When people with Down syndrome are included in the regular classrooms, and treated like anyone without a disability would be by their education systems and families, they can learn and do practically anything. The vast majority of people with Down syndrome have not been included or treated that way, and that is why the stereotype exists.
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Antonarakis, S. E., Lyle, R., Dermitzakis, E. T., Reymond, A., & Deutsch, S. (2004). Chromosome 21 and Down Syndrome: From Genomics to Pathophysiology. Nature Reviews Genetics, 5(10), 725–738.
Chin, C. J., Khami, M. M., & Husein, M. (2014). A general review of the otolaryngologic manifestations of Down Syndrome. International Journal of Pediatric Otorhinolaryngology, 78(6), 899–904.
What are common symptoms of Down syndrome? (2017, January 31). Retrieved from https://www.nichd.nih.gov/health/topics/down/conditioninfo/symptoms
Fox, S. M. (2017, February 7). Down Syndrome Airway. Retrieved from https://pedemmorsels.com/down-syndrome-airway/
Gupta, R. C. (Ed.). (2014, October). Flat Head Syndrome (Positional Plagiocephaly) (for Parents). Retrieved from https://kidshealth.org/en/parents/positional-plagiocephaly.html
Kaneshiro, N. K. (2017, February 16). Epicanthal fold: MedlinePlus Medical Encyclopedia Image (D. Zieve & B. Conaway, Eds.). Retrieved from https://medlineplus.gov/ency/imagepages/17169.htm
Weerakkody, Y. (n.d.). Sandal gap deformity | Radiology Reference Article. Retrieved from https://radiopaedia.org/articles/sandal-gap-deformity?lang=us