The prevalence of these conditions within our community will shock you and become urgent calls to action!
In addition to the various complications many babies with Down syndrome must deal with at birth, these five common health issues plague most adults with Down syndrome throughout their adult lives.
WARNING: Contrary to most of my website articles that celebrate the talents and opportunities of the Down syndrome community, this post has grave warnings for families and caregivers. However, it's important to be aware of these issues and take steps now to prevent, manage, and prepare.
Hypothyroidism: your brain's hypothalamus produces a thyrotropin-releasing hormone that tells the pituitary gland to make a thyroid-stimulating hormone (TSH). If your body doesn't produce enough thyroid hormone, hypothyroidism results.
Prevalence: 5-10% of the general public; approx. 40% of people with DS
Onset: often starts during childhood and can increase in severity as one ages
Symptoms: low energy, muscle pain or weakness, difficulty thinking and focusing
Prevention: no particular steps to prevent hypothyroidism
Management: see your doctor early and often for a simple blood test. If necessary, the doctor can prescribe man-made thyroid hormones such as Levothyroxine sodium as a supplement. Annual checkups are recommended as thyroid levels will vary.
Repercussions: if unchecked, can result in less energy and lower metabolism (hence weight gain) as well as slower cognitive development, all of which are already challenges for adults with Down syndrome.
Sleep Apnea: due to narrower passageways especially common in children and adults with Down syndrome, sleep apnea often develops.
Prevalence: 26% of the general public ages 30-70; approx. 60% of children with DS by age 4
Onset: often starts as a baby/toddler and can increase in severity as one ages
Symptoms: not just nighttime snoring but periods of no breathing which results in dozens of episodes each "sleeping" hour and thus very poor sleep quality
Prevention: no particular steps to prevent sleep apnea
Management: see your doctor at the earliest sign for testing. Sometimes tonsils or adenoids will be removed to improve breathing. These may remedy the issue, sometimes other surgeries like uvulectomy are warranted, but often the doctor will eventually prescribe a continuous positive pressure ventilation device (CPAP) to be worn during sleep. With support and practice, this can become part of your child's nighttime routine.
Repercussions: if unchecked, can result in poor sleep and low energy, but also hypertension, heart issues, behavioral issues, decreased cognitive abilities, and/or reduced growth rate.
Obesity: many adolescents and adults with Down syndrome are overweight and obese due to slower metabolism, often exacerbated by hypothyroidism, sleep apnea, stubbornness, or a lack of inclusion in group activities.
Prevalence: 16-18% of the general public adolescents; approx. 30-50% of children with DS
Onset: often starts as a toddler and increases in severity during adolescence
Symptoms: likes to eat on a schedule and when others eat without recognition of when they are truly hungry; Low metabolism and lack of exercise results in weight gain, even when overeating is not obvious.
Prevention: introduce nutrition, hunger awareness, and exercise from the earliest age to become part of their lifelong routine
Management: doctors can provide some guidance. Nutritionists can be quite helpful as well as talking about nutrition, food groups, and hunger awareness around the dinner table.
Repercussions: if unchecked, can result in lung and heart disease, as well as cancer or arthritis. Obesity can complicate sleep apnea and mental health as well.
Mental Health: well beyond the Intellectual/Developmental Disability diagnosis, lack of inclusion at school, at home, or in their own future plans, as well as obesity, and poor communication skills to share their mental health state, concerns, and conditions often result in mental health issues by adulthood.
Prevalence: mental health issues such as anxiety, obsessive-compulsive disorder (OCD), and depression are twice as likely in individuals with Down syndrome. I suspect that is even understated as the diagnosis itself can be challenging for those with cognitive disabilities.
Onset: often starts in adolescence and can increase in severity as one ages
Symptoms: inattentiveness, new behavioral issues, sluggishness, skills regression, and new fears of objects or events are signs of mental health issues. Parents, teachers, and caregivers should not be too quick to just mark this up to their Down syndrome or I/DD diagnosis but should delve further seeking to understand root causes.
Prevention: mental health issues may not always be preventable but especially for people with Down syndrome, helping them understand their emotions and discuss their issues and concerns may help address issues early
Management: consider specially-trained therapists as an ongoing resource to help people with Down syndrome to recognize issues, share them, and find implementable solutions.
Repercussions: if unchecked, can result in skills regression (stop using their educational, vocational, and/or social skills), overeating, decreased self-esteem and confidence, and perhaps the earlier onset of dementia.
Alzheimer's Disease: recent research indicates the "Alzheimer's gene" resides on the 21st chromosome. This has increased the frequency, speed, and severity of Alzheimer's disease amongst the Down syndrome population.
Prevalence: 12% of adults in the general population; 95% of adults with Down syndrome by age 68, and perhaps more worrying is 70% by age 60, 50% by age 50. Signs of Alzheimer's can set in as early as their 30's and often progresses much faster in adults with Down syndrome, often leading to death after just 2-4 years.
Onset: signs as early as the 30s. By age 40, almost all Down syndrome brains have proteins that are Alzheimer's markers.
Symptoms: forgetfulness, lack of motivation, belligerence, new discomfort with routines.
Prevention: there is no particular prevention but cognitive disabilities can accelerate the disease, so greater cognitive engagement (learning through education, work, and exposure to new experiences) may help delay the onset. Some indications are that Alzheimer's occurs most often with learning challenges, hypertension, obesity, diabetes, physical activity, sleep apnea, and low social contact. These are all prevalent with Down syndrome.
Management: pay attention to the symptoms and seek to address the preventative conditions noted above. The National Task Group provides a lot of information including a test that can be taken annually to gauge the advancement of conditions. Plan now for how your loved one may be attended to if/when Alzheimer's sets in. Some living communities provide sustainable care including for Alzheimer's and others do not.
Repercussions: there is currently no prevention or cure for Alzheimer's disease. However, there is a lot of research working toward a cure, much of which overlaps Down syndrome given the shared 21st chromosome.
See Gwendolyn's personal experiences below!
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Personally, our 27-year-old, Gwendolyn, has fallen victim to nearly all of these issues. We are proactively managing some and struggling to address others:
Hypothyroidism: Gwendolyn has been on Levothyroxine since the age of 10 with periodic adjustments. That must be helping but her metabolism is extremely low.
Sleep Apnea: Gwendolyn had her tonsils and adenoids out as a baby. She got her CPAP when she was 18 and quickly adjusted to it. She now gets a much better night's sleep.
Obesity: Gwendolyn struggles in this area. She has taken classes on nutrition and can recite many of the verses. I can't say that she overeats or binges, she just doesn't recognize when she is full and her very low metabolism makes it difficult to lose any weight. She takes a couple of fitness classes (biking, gym, games) at her new living community every weekday yet weight loss eludes her.
Mental Health: Gwendolyn is generally in good spirits. She communicates her feelings when prompted but often gets frustrated with social norms and relationships. Gwendolyn has been seeing a qualified therapist for about 5 years and this appears to help flush out issues and provide some options.
Alzheimer's disease: Gwendolyn doesn't appear to have issues here today but we have noticed she may forget things occasionally. It's hard to tell if that is just normal, because of our heightened awareness of the preponderance and risks of Alzheimer's, or if it's early faint markers. We are planning to begin to administer the NTG test to establish a baseline for retesting annually.
Regardless of whether your person with Down syndrome is 5, 25, 45, or more, there are still actions you can take to manage these serious health risks.
For more information see a past blog and the following references::