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Tuesday, October 29, 2013

Not Suffering From Down Syndrome

There was a discussion today on FB over a comment saying that people with Down syndrome suffer.

The reference to suffering from Down syndrome is seen in articles (the last 2 paragraphs) and websites describing the condition.

Here is the thing though: Down syndrome is not a disease. It is a syndrome. And this syndrome is a set of symptoms and/or characteristics indicating the existence of a condition.

Down syndrome is an extra chromosome. That extra chromosome does not cause the people who have it to experience pain from the extra chromosome. Pain would equal suffering. You do not suffer from the extra chromosome.

Yes, there are a list of potential health problems that can be associated with Down syndrome, but are not unique to Down syndrome; they can also be found in the general population.

Individuals with Down syndrome may be at a higher risk for certain health conditions, but not all people with Down syndrome will have every potential health condition listed. There are some people with Down syndrome who don't have any other health problems at all.

Kayla is relatively healthy. She doesn't have too many of the associated health conditions.
- She had a small ASD that closed on its own and a small PDA that was closed with a cardiac catheter
- She's had 4 sets of PE tubes in her ears
- She has Celiac Disease
- She has some vision issues and wears glasses
- She was recently diagnosed with mild/moderate sleep apnea and will probably need her tonsils taken out as a first plan of action

Who is to know if Kayla would have had any of those issues if she didn't have Down syndrome? Joe has had his tonsils and adenoids out and he still snores!

Dictionary.com defines suffering as: to undergo or feel pain or distress

Even with that small list of health issues; Kayla still wasn't/isn't suffering from any of those. She might have been suffering from a headache from eye strain before getting glasses, but she never expressed it if she was.

Many adults with Down syndrome do have dementia and/or Alzheimer's disease when they get older. It is more correct to then say that they are suffering from Alzheimer's disease (although it could be simply stated as saying they have Alzheimer's instead of suffering from). The 'suffering' would be referring to the condition/disease and not Down syndrome. 

You don't suffer from Down syndrome in and of itself. But some of the specific medical conditions that someone might also be diagnosed with could cause pain, and then suffering, if not treated.

Interesting that Dictionary.com also says, "It is better to avoid using the words suffer and sufferer in relation to chronic illness or disability. They may be considered demeaning and disempowering. Suitable alternative are have , experience , be diagnosed with."

Exactly. Kayla has Down syndrome, she does not suffer from it. 

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Anonymous said...

very goood response!! and you explained very well!! love mom

sondrakwhite said...

Thanks for such a thoughtful blog and reminder that our children are not suffering from Down syndrome!

J said...

Yeah I've seen it with Cerebral Palsy too! I'm not a Cerebral Palsy Sufferer Urgg!! I just have it,
Great Explanation Michelle

J said...
This comment has been removed by the author.