WELCOME

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Parents, we know learning that your child has Down syndrome might be scary. If you don’t spend much time with people who have Down syndrome already, Down syndrome is different to you- it is unknown. You are journeying into the unknown, and the unknown can be scary. Take it from those of us who have completed the journey: there is nothing to be scared of. Even though there’s nothing to be scared of, you still might feel that way. That’s okay. We’re here to help. Consider us your tour guides on this journey. This page will teach you about Down syndrome, and give you the option to be put in contact with people with Down syndrome, other new parents, and experienced family and friends. If you have questions along the way, don’t hesitate to ask- the button below will be available throughout the page. Congratulations on your new loved one! Let’s begin!

 

YOUR QUESTIONS ANSWERED

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Most likely, there are a million questions running through your head right now. Don’t worry- there are many other new parents with the same questions running through theirs too. We’re going to answer as many of the most commonly asked questions as we can below. Before we do, we have some people who would like to congratulate you in the video below:

 

Is Down syndrome a disease? Is my child sick?

No. Down syndrome is not a disease. Down syndrome does not make your child sick. Down syndrome is a genetic characteristic, it is not a disease and it does not cause pain or suffering (1). During reproduction, each person gets 23 chromosomes from their mother and 23 chromosomes from their father (6). Chromosomes are proteins that carry your genetic information. Genetic information is what decides your natural physical makeup (6). 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 (6). The 46 chromosomes pair together when they meet, forming 23 pairs (4). Sometimes, the 21st pair of chromosomes randomly turns into a triplet (1). When that happens, it's called Down syndrome.

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 (2). If you are man, you are more likely to develop kidney cancer than women (3). Does every person of African descent develop hypertension or diabetes? No (2). Does every man develop kidney cancer? No (3). 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 (4)

·       Nearsighted or Farsighted (4)

·       Refractive Errors (4)

·       Obstructive Sleep Apnea (4)

·       Hypodontia and Delayed Dental Eruption (4)

Here are the less common medical disorders that people with Down syndrome have a higher risk for developing:

·       Thyroid Disease (4)

·       Gastrointestinal Atresia (4)

·       Celiac Disease (4)

·       Spinal Disorders (4)

·       Leukemia (5)

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 medical disorders and 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 (4).


Are the doctors correct that my child will have a low quality of life? Will my child be able to do the things other children will be able to do?

No, the doctors are not correct. If treated the same way by their society, family, medical care providers, education systems, and governments, as people without any disability would be treated, people with Down syndrome can graduate from high school, graduate from college, find careers, become entrepreneurs, get married, start families, and more. It is all up to you. Will you treat your child the same as you would if they didn’t have a disability? If so, then you’re on the right track. Different aspects apart from Down syndrome have the potential to decrease your child’s quality of life apart from Down syndrome. Your child can have medical disorders, disabilities, or mental disorders in addition to Down syndrome. In people without Down syndrome, these are quickly recognized and treated accordingly because there is nothing to “blame” them on. In people without Down syndrome, though, these often go undiagnosed because people assume they’re just part of having Down syndrome. So how will you be able to know? Well, know your child. If you treat them the same as you would if they didn’t have a disability, and they are receiving that same treatment from their other family members, medical care providers, and education systems, take a quick step back. See if there is any way that maybe they’re not being treated correctly. If you recognize something, correct it, and see if that helps. If not, figure out what’s going “wrong” and do some research. See if what’s going “wrong” is actually anxiety, ADHD, autism, etc. People without Down syndrome sometimes need speech therapy, occupational therapy, or physical therapy- people with Down syndrome might need those too. Your child’s quality of life will not be lessened by Down syndrome, but their quality of life is up to you, just like it would be if they didn’t have Down syndrome.


Have a question? Ask! We want to add more answers to this page!

 

DOWN SYNDROME

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So now that you know what Down syndrome is, what comes along with it? Mentally, physically, emotionally? What makes Down syndrome? We have those answers for you. If you click on the button below, you will be taken to a page all about Down syndrome! Below the button are some widely known people with Down syndrome for your viewing.

 
 
 

MORE people COMING SOON

 FAMILY LIFE

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You might be wondering how this will affect your family. How will the rest of your family perceive your child? If you have other children without Down syndrome, will they get along with their new sibling? Don’t worry. It’s all up to you. There will always be family members who might judge your children for whatever reasons, but it’s how you set the tone that determines how other family members, and especially your child’s siblings, will react and treat your child. Most people, if they don’t have much experience with people who have Down syndrome, ignorantly believe that Down syndrome is a bad thing. They feel bad for you, and want to apologize. If you present your child as tragedy, and accept their apologies, they will view your child as a burden and treat them as such for the rest of their lives. If you present your child the same way you would if they didn’t have a disability- as someone to be celebrated- family members will follow your lead. Like we said, there will always be those family members who might judge your children for whatever reasons, but it’s how you set the tone that determines how they will react and treat your child.

Siblings are no different- you set the tone. If you present their new sibling the same way you would if they didn’t have a disability- as someone to be celebrated- your other children will follow your lead. If you treat their new sibling like you would if they didn’t have a disability, your other children will follow your lead.

Most parents, family members, siblings, and friends of people with Down syndrome report that the person with Down syndrome in their lives has made their lives better. Many of us here at Save Down Syndrome can attest to that. Don’t believe us? Look at the results of the studies below.

 

Parents of people with Down syndrome

Skotko, B. G., Levine, S. P., & Goldstein, R. (2011). Having a Son or Daughter With Down Syndrome: Perspectives From Mothers and Fathers. American Journal of Medical Genetics, 155(10). Retrieved from http://brianskotko.com/wp-content/uploads/2015/12/AJMG-Parent-FINAL-paper.pdf
 

Siblings of People with Down syndrome

Skotko, B. G., Levine, S. P., & Goldstein, R. (2011). Having a brother or sister with Down syndrome: Perspectives from siblings. American Journal of Medical Genetics, 155(10). Retrieved from http://brianskotko.com/wp-content/uploads/2015/12/AJMG-Siblings-Final-Article.pdf
 

 CONNECT

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 REFERENCES

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  1. 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.

  2. 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.

  3. American Cancer Society. (2019). Key Statistics About Kidney Cancer. Retrieved from https://www.cancer.org/cancer/kidney-cancer/about/key-statistics.html

  4. Bull, M. J. (2011). Clinical Report: Health Supervision for Children with Down syndrome. American Academy of Pediatrics, 128(2).

  5. 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

  6. Hill, M.A. (2019, July 30) Embryology Fertilization. Retrieved from https://embryology.med.unsw.edu.au/embryology/index.php/Fertilization