To understand Down syndrome, it is important to make sure you have a basic understanding of the science behind it. During reproduction, each person gets 23 chromosomes from their mother and 23 chromosomes from their father (12). Chromosomes are proteins that carry your genetic information. Genetic information is what decides your natural physical makeup (12). 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 (12). The 46 chromosomes pair together when they meet, forming 23 pairs (5). Sometimes, the 21st pair of chromosomes randomly turns into a triplet (5). When that happens, it's called Down syndrome, named after John L. Down (15). Many believe that John L. Down was the first to discover Down syndrome, but he was only a British psychologist whose work inspired the name Down syndrome, rather than “mongolism” (15). Down syndrome was discovered by the work of Jean-Etienne-Dominique Esquirol in 1838, and Edouard Seguin in 1846 (15).
Down syndrome is a genetic characteristic, it is not a disease and it does not cause pain or suffering (5). Stereotypes will tell you that people with Down syndrome are unintelligent and incapable, but that's not true (9). When people with Down syndrome are treated the same as people without any disabilities are treated by their societies, families, education systems, medical care providers, and governments, they can graduate from high school, graduate from college, find careers, start businesses, get married, and more (9). The world is just now beginning to realize this- that's why so many people with Down syndrome haven't been able to do those things in the past. The more people recognize the truth, the more people with Down syndrome will be able to accomplish!
If you want a quick lesson about Down syndrome, we suggest you watch the video below.
Different genetics bring about different physical characteristics. For example, if you are of eastern Asian decent, you most likely have a flatter nose bridge than someone of Latin american descent. If you are a man, you most likely have broader shoulders than a woman. No characteristic is better than the other, they're just different. Down syndrome brings with it several different physical characteristics. Not every person of eastern Asian descent has a flatter nose bridge than people of Latin American descent. Not every man has broader shoulders than a woman. Physical characteristics associated with different genetic groups represent the majority of people in the genetic group- they do not represent each individual. Likewise, not every person with Down syndrome has every physical characteristic associated with Down syndrome. Here are some of the common characteristics associated with Down syndrome:
Most people with Down syndrome are a few inches shorter in height than people without Down syndrome (14). Height differences also come with different general genetics, as well as different ethnicities, different genders, etc. Height differences are not specific to Down syndrome.
Low Muscle Tone
To put it in simple terms, muscle tone is how strong your muscles are (1). Some people with Down syndrome naturally have low muscle tone, but through exercise this can easily be changed (14). Some babies without Down syndrome are born with low muscle tone too (11). Some people will also tell you that Down syndrome causes people to have a flat back of the head, but that’s not true (1). What those people are recognizing is Positional Plagiocephaly (1). If any baby with low muscle tone is placed on their back for long periods of time, it is harder for them to lift their head or roll over (1). This leads to them staying on their back, which then leads to the flattening of the back of their head (1). Their head can easily be shaped back by wearing a specific type of helmet (1). Babies with and without Down syndrome can have low muscle tone and develop Positional Plagiocephaly, and babies with and without Down syndrome can receive physical therapy and temporary helmet therapy to correct it (1). Just like some babies with low muscle tone who do not have Down syndrome don’t develop positional plagiocephaly, some babies with low muscle tone who do have Down syndrome don’t develop positional plagiocephaly.
Epicanthal Eye Folds
You may have noticed that people with Down syndrome have almond-shaped eyes. A more technical term for this is "epicanthal eye folds" (14). Different eye shapes also come with general genetics, as well as different races, different ethnicities, etc.
Flattened Facial Profile
A common characteristic of Down syndrome is a flat nose bridge and a button nose (14). This characteristic can also come from general genetics, and it is not specific to Down syndrome.
People with Down syndrome have a smaller trachea and nasopharynx, parts of your throat that lead to your lungs, than most people without Down syndrome (10). This is important for medical providers to know regarding possible intubation in an emergency (10).
Small Hard and Soft Palate
It is a common misconception that people with Down syndrome have large tongues. In reality, they have smaller mouths (14). This is what leads to the specific tone to people with Down syndrome's voices (14). If someone with a small hard and soft palate finds it difficult to keep their tongue in their mouth, they can easily change that with at home speech exercises (13).
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 (14).
Larger Space by Big Toe
Some people with Down syndrome have a larger space between their big toes and the rest of their toes than people without Down syndrome (14).
Watch the video below of Chelsea Werner, a gymnast with Down syndrome, to shatter any preconceived notions about physical limitations.
It is a common misconception that Down syndrome causes people to be unintelligent, and therefore incapable. The intelligence and capability of people with Down syndrome varies just like it does with the rest of the population (9). Down syndrome does not genetically make someone unintelligent or incapable (9). If you take any group of people with a common similarity, declare that they are unintelligent and incapable, and restrict them from a regular education, they will not be intelligent or capable. It is not the fault of their common similarity, however, it is the fault of how they were treated. This has been done to people throughout history due to their gender or race, and it's still being done to people with Down syndrome right now.
In academic settings, people with Down syndrome are often not given the correct materials to reach their full academic potentials (9). We use one form of teaching to educate all children, but the problem is that all children are different. Instead of changing the way we educate children, and getting rid of using just one form for all, we instead consider the kids who get by and barely get by as less intelligent than the ones who thrive under the particular way of teaching that we use. Those kids who get by and barely get by are just as intelligent as those who thrive- they just are not being taught according to the way they learn. Everyone learns differently, and everyone can be taught to learn differently than their natural way (8).
People with Down syndrome are no different, except there isn’t a common label that you can place on the kids who get by, and barely get by, in order to discredit their abilities and shove them all into a room together where they play with play-dough, and learn the alphabet over and over until they graduate with a lesser diploma (A.K.A special education rooms). There have been several people who have recognized this, and one created a specific type of teaching that accommodates to each child’s way of learning. It is called the Feuerstein Method, named after the man who invented it, Dr. Reuven Feuerstein (9). While alive, Dr. Feuerstein received children with Autism, Down syndrome, and other disabilities that were deemed unteachable by their education systems (9). With his method, Dr. Feuerstein ended up sending them to higher education and college, and not only changing their academic lives, but their personal lives through the method (9). Dr. Feuerstein proved the theory that people with Down syndrome are intelligent and capable, they are just not taught correctly.
People with Down syndrome can also benefit from the Cognitive Development Curriculum. Partly inspired by Feuerstein’s work, the Cognitive Development Curriculum has been shown by multiple studies to improve cognitive function in all people, with or without Down syndrome. The Cognitive Development Curriculum has also been proved to improve the cognitive function of people with Down syndrome, Autism, Fetal Alcohol syndrome, Post-Concussion syndrome, and processing disorders. The curriculum also increases the presence of intellectual aspects that are decreased by Alzheimer’s disease. As stated by Dr. Carol brown in Cognitive Development Curriculum Increases Verbal, Nonverbal, and Academic Abilities, “the current research found that training in working memory, processing, comprehension, and reasoning with a holistic approach does provide convincing evidence to the generalization of verbal abilities, nonverbal abilities, and IQ composite. Similarly, far transfer effects to academic abilities in science were substantiated with significant gains using the Equipping Minds Cognitive Development Curriculum” (6). Click on the buttons below to learn more about the Cognitive Development Curriculum.
You’ve probably heard people say that people with Down syndrome are always happy. However, that is not the case. People with Down syndrome have the same emotions as people without Down syndrome do. What people are recognizing when they say that people with Down syndrome are always happy, is actually the ability people with Down syndrome have to love everyone unconditionally. This does not mean that people with Down syndrome like everyone, nor does it mean they're always happy. What it means is that they see the humanity of each person, and place the same value on them. Exclusion and cruelty are foreign concepts to them. This can often be masked by also having other disabilities that make communication or expression of emotions difficult, being abused, or being neglected. There is no scientific evidence to corroborate this- we have not discovered a spot on the 21st chromosome that codes for unconditional love- but there are endless accounts of people with Down syndrome, as well as family members and friends of people with Down syndrome, who know this to be true. Several studies have revealed that the majority of parents and siblings of people with Down syndrome feel as through their family member with Down syndrome has made their lives better (17).
This natural desire and ability of unconditional love makes people with Down syndrome a big target for abuse. People with intellectual disabilities overall are seven times more likely to be sexually assaulted than people without intellectual disabilities (16). It is often the primary caregiver, or one of several caregivers, who commits the assault (16). It is important to educate yourself if you have Down syndrome, or any family member or friend with Down syndrome, on how to recognize abuse and how to report it. Click on the button below to view a video explaining how people with Down syndrome can prevent abuse.
Down syndrome brings with it an increased risk of developing several medical disorders. So does every race, gender, and general genetic makeup possible. If you are of African descent, you are more likely to develop hypertension than those of other descents (4). If you are man, you are more likely to develop kidney cancer than women (2). Does every person of African descent develop hypertension or diabetes? No (4). Does every man develop kidney cancer? No (2). A risk just means that because of your genetic trait, you have a higher chance of developing specific medical disorders. Here are the most common medical disorders that people with Down syndrome have a higher risk of developing than people without Down syndrome:
· Heart Defects (7)
· Nearsighted or Farsighted (7)
· Refractive Errors (7)
· Obstructive Sleep Apnea (7)
· Hypodontia and Delayed Dental Eruption (7)
Here are the less common medical disorders that people with Down syndrome have a higher risk for developing:
· Thyroid Disease (7)
· Gastrointestinal Atresia (7)
· Celiac Disease (7)
· Spinal Disorders (7)
· Leukemia (3)
All of the medical disorders listed above, both most common and least common, are not specific to Down syndrome. People without Down syndrome can develop these medical disorders as well.
Just like people without Down syndrome, people with Down syndrome can also have other disabilities in addition to their Down syndrome, as well as mental disorders. Disorders that are not visible to the naked eye often go undiagnosed in people with Down syndrome, and the characteristics are blamed on Down syndrome without any scientific backing. ADHD, Autism, Depression, and Anxiety are a few examples (7).
Many people with Down syndrome are proving that stereotypes are just that: stereotypes. These people are changing the world and making history.
More people coming soon- page under construction.
Down syndrome may make life a little different, but it doesn’t make life hard. How people treat people with Down syndrome makes life hard, and often holds people with Down syndrome back from reaching their full potential and living everyday lives. Part of our goal at Save Down Syndrome is to educate the world about the genocide, discrimination, and mistreatment of people with Down syndrome, and how to stop it. Click below to learn more.
American Association of Neurological Surgeons. (n.d.). Positional Plagiocephaly. Retrieved from https://www.aans.org/en/Patients/Neurosurgical-Conditions-and-Treatments/Positional-Plagiocephaly
American Cancer Society. (2019). Key Statistics About Kidney Cancer. Retrieved from https://www.cancer.org/cancer/kidney-cancer/about/key-statistics.html
American Cancer Society. (2019, February 12). Risk Factors for Childhood Leukemia. Retrieved from https://www.cancer.org/cancer/leukemia-in-children/causes-risks-prevention/risk-factors.html
American Heart Association. (2017). What about African Americans and High Blood Pressure? American Heart Association. Retrieved from https://www.heart.org/-/media/data-import/downloadables/pe-abh-what-about-african-americans-and-high-blood-pressure-ucm_300463.pdf?la=en&hash=95E93A0B6B484F665782A17CA1FFD148EDEEAFB7.
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, 725-738.
Brown, C. T. (2018). Cognitive Development Curriculum Increases Verbal, Nobverbal, and Academic Abilities. Nova Science Publishers.
Bull, M. J. (2011). Clinical Report: Health Supervision for Children with Down syndrome. American Academy of Pediatrics, 128(2).
Feuerstein, R., Feuerstein, R. S., & Falik, L. H. (2010). Beyond Smarter: Mediated Learning and the Brain's Capacity for Change.
Feuerstein, R., Rand, Y., & Feuerstein, R. S. (2006). Don't Accept Me As I Am: Helping the Low Functioning Person Excel.
Fox, S. M. (2017). Down Syndrome Airway. PedEMMorsels. Retrieved from https://pedemmorsels.com/down-syndrome-airway/
Govender, P., & Joubert, R. W. E. (2018). Evidence-Based Clinical Algorithm for Hypotonia Assessment: To Pardon the Errs. Occupational Therapy International, 1–7. https://doi-org.libproxy.bellarmine.edu/10.1155/2018/8967572
Hill, M.A. (2019, July 30) Embryology Fertilization. Retrieved from https://embryology.med.unsw.edu.au/embryology/index.php/Fertilization
Intermountain Health Care. (2018). Tongue Thrust: Rehabilitation: Pediatrics. Retrieved from https://intermountainhealthcare.org/services/pediatrics/services/rehabilitation/services/tongue-thrust/
National Institutes of Health. (2017, January 31). What are common symptoms of Down syndrome? Retrieved from https://www.nichd.nih.gov/health/topics/down/conditioninfo/symptoms
Roubertoux, P. L., & Kerdelhue, B. (2006). Trisomy 21: From Chromosomes to Mental Retardation. Behavior Genetics, 36(30), 346-354.
Shapiro, J., & Thaler, N. (2018, January 17). Sex Abuse Against People with Disabilities is Widespread- and Hard to Uncover [Interview by J. Woodruff]. Retrieved from https://www.youtube.com/watch?v=n_Ce-FczgWY
Skotko, B. G., Goldstein, R., Levine, S. P., & De Graaf, G. (2018). Parents' Perceptions of Functional Abilities in People with Down syndrome. Wiley American Journal of Medical Genetics, 161-176.