Something Else To Look Forward To

It’s always something. There always seems to be the occassional monkey wrench tossed in the mix, more times than not. This is a commom occurence in most families I would think, but sometimes I REALLY feel like some get hit with a double-whammy MORE than others.

Hitting the morning talk shows this past week, researchers have released information regarding Down Syndrome and Alzheimer’s Disease. When I was enrolled with Jenni back at the Exceptional Children’s Foundation’s infant stim program, I also received a quarterly newsletter from the National Down Syndrome Society. It contained pertinent information but most of it was geared toward older children and adults. When Jenni was around 7 or 8 years old I had received the latest newsletter and there was a brief article- more like a brief paragraph- stating that ‘Researchers have connected a link to Down Syndrome and Dementia and Alzheimer’s Disease’. That was it. Nothing else, no earth shattering news that would sweep us parents off our feet. I continued to get the newsletters for the next 15 years or so and I never read any further new information about the ‘link’.

Throughout the years we have had our fair share of joy and excitement to heartache and acceptance over Jenni’s development. We discovered, hands on, that no two people with Down syndrome are alike. Each ‘dolly’ has their own individual issues whether it be cardiac, dental, speech, internal, dermatology, dental, and so on.
This ‘new’ news is the latest we have to worry about. Or not worry about. I can’t let it eat at me and will not stress over it, at least that’s my plan. What will be will be.

Down syndrome is a condition in which a person is born with extra genetic material from chromosome 21, one of the 23 human chromosomes. Most people with Down syndrome have a full extra copy of chromosome 21, so they have three copies instead of the usual two. In ways that scientists don’t yet understand, the extra copies of genes present in Down syndrome cause developmental problems and health issues. Scientists think that the increased risk of dementia in individuals with Down syndrome may also result from the extra gene.

As they age, those affected by Down syndrome have a greatly increased risk of developing a type of dementia that’s either the same as or very similar to Alzheimer’s disease.

Studies suggest that more than 75 percent of those with Down syndrome aged 65 and older have Alzheimer’s disease, nearly 6 times the percentage of people in this age group who do not have Down syndrome.
Down syndrome remains a condition that shortens lifespan. People with Down syndrome experience earlier-than-usual onset of a variety of conditions linked to aging in addition to Alzheimer’s disease. People with Down syndrome currently live, on average, about 55 to 60 years, although some live into their seventies and, rarely, into their eighties.

And this is the part that worries me, because it will be hard to decipher with Jenni: Diagnosing dementia in a person with Down syndrome can be difficult because of the challenges involved in assessing thinking-skill changes in those with intellectual disabilities.

Like I said earlier, It’s always something.

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