Ds Awareness Day#8: Health and Medical Issues

Are individuals with Down syndrome always sick?  No! 

Some health problems are more common among people with Down syndrome than among the general population. However, given knowledgeable and well-resourced medical care, most of these can be successfully treated or managed. Here are some of the more common health problems:

Infections: Respiratory infections are more common among individuals with Down syndrome, especially during the first five years of life. There is evidence that individuals with Down syndrome have this increased susceptibility to infection because their immune systems have some abnormalities, though the mechanisms involved remain unclear.

Heart Defects: Heart defects occur in around 47% of individuals with Down syndrome and 10 to 15% of babies with Down syndrome have a severe heart defect that requires surgical intervention during the first few months of life. The ability to repair major heart defects has had a major impact on infant survival for children with Down syndrome in countries with appropriate facilities and expertise. [Peter was born with a cardiac condition, and underwent open heart surgery at 7 weeks.]

Leukemia: Children with Down syndrome have a 10 to 20 fold increased risk of developing leukemia The cumulative risk for leukemia by the age of 5 years is around 2%. Many children with Down syndrome and acute leukemia can be successfully treated with appropriate treatment. [Peter was diagnosed at age 3 with leukemia. He is post treatment, and considered ‘in remission’. We look forward to the day we can say CANCER FREE!]

Thyroid: Thyroid disorders are more prevalent among individuals with Down syndrome.  Once diagnosed, hypothyroidism can be simply and effectively treated, though this treatment and further monitoring is required throughout the individual’s life. [Peter went from borderline hyperthyroidism to definite hypothyroidism over a few years, and is now in treatment that he will continue through his life.]

Hearing: Up to 80% of children with Down syndrome experience hearing loss, sometimes severe. Even mild hearing loss will lead to difficulties in speech and language development. A variety of interventions are now available to treat or ameliorate the effects of hearing loss. Where children are having difficulty earning to talk because of hearing loss, signing may also help. [In addition to selective hearing, Peter does have hearing difficulties in certain sound ranges. While still considered “functional”, we continue to monitor his hearing closely so that we can implement treatment should his hearing deteriorate.]

Vision: Individuals with Down syndrome are more likely to experience vision disorders such as short sightedness, long sightedness and astigmatism. They are also more likely to have squints and to experience delays in developing effective focusing, depth perception and sharpness of vision. Many of these problems can be corrected to give good vision with the use of corrective lenses. [Peter wears glasses, which assist with day to day functioning. He still struggles with interpreting some of what he sees, which impact his learning and mobility. For example, Peter interprets change in flooring color as a distance change, and will try to step up or down when there is no change in surface levels.]

Sleep Disorders: Studies have reported a high incidence of sleep disturbance among children and adolescents with Down syndrome. [Peter has mild to moderate sleep apnea, which contributes to his Pulmonary Hypertension and the need to continue oxygen therapy when sleeping.]

Virtually all of the health issues that occur in people with Down syndrome also occur throughout the wider population. Therefore, general advances in medical care for all children and adults have also benefited those with Down syndrome. General medical advances and equal access to them are the main reasons for the increased life expectancy observed for people with Down syndrome in developed countries.

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Peter has been on the “frequent flyer” program at the hospital, and has been known to unhook his monitors and make a run for it – IV drip and all!

Peter’s Story: When he turns 18 years old, Peter is buying a lotto ticket. It will be a winning lotto ticket! How do I know this? While most individuals with Down syndrome lead healthy lives, many will have one or more of the common conditions for which there is a predisposition. So far Peter has them all, and more! How is that for the winning numbers?!

If you would like to know more about the conditions above, any I didn’t list, or specifically what Peter struggled with – comment below and I will reach out to you directly.  John and I are always happy to answer those questions that we can, and be support to families that may be going through something we have already journeyed with Peter.

 

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2 thoughts on “Ds Awareness Day#8: Health and Medical Issues

  1. Am looking forward to spending a few days with all of you. Even though I have heard you explain some/most of this information about Down Syndrome, I find that I have a better understanding of what is happening with Peter just by reviewing all of this. Thank you for the info that gives me the tools to answer my friend’s questions about how he is doing.

    • So glad you are getting the updates! We are looking forward to seeing you. Have a long list of things to do….so you may need to just stay a long time! I am really hoping we can make the shrine of Mother Cabrini – too many years in CO but not visited!

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