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Terminology

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7 years 11 months ago #61457 by alisonp
Terminology was created by alisonp
I've been looking at the Facebook site recently......they are waaay more jumpy than here! One thing that occurs to me is that the way you talk about ITP can really matter to how you live with it. Talking about your count crashing rather than falling, about a disease rather than a condition, about chronic rather than long-lasting and about aggressive treatment for example. All these words make ITP sound frightening and threatening to me, and gives decisions a sense of urgency that simply isn't there for most people.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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7 years 11 months ago #61461 by Sandi
Replied by Sandi on topic Terminology
I agree, which is why I don't read the FB page much. Once in a while I give the link to this discussion group because there seems to be a lot of scared, misinformed people out there. I've never used the word 'disease', I use disorder. 'Disease' sounds ugly and contagious, especially when people hear that it involves blood.
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7 years 11 months ago #61463 by MelA
Replied by MelA on topic Terminology
I for one am not diseased - I have a disorder :) I think the longer we deal with it the less devastating it seems to be - we realize we do not need a count in the normal range, we realize we aren't going to die - maybe that is when the terminology changes.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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7 years 11 months ago #61464 by Sandi
Replied by Sandi on topic Terminology
True, and that's what we are here for! I also think that a patient's fear is gauged on the doctor's initial and following reactions.
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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7 years 11 months ago - 7 years 11 months ago #61473 by Hal9000
Replied by Hal9000 on topic Terminology
If I had to use my real full name here on PDSA forum as in Facebook, I doubt I would be posting here.
I don't see an advantage to giving up/abandoning all of one's privacy on the Internet.
ITP Types and Treatments by HAL
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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


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