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I Hate The Word "disease"


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10 replies to this topic

#1 divamomma

 
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Posted 01 September 2011 - 09:10 AM

I was very annoyed and disappointed yesterday at the library. I was looking for Dana Korn's book regarding children and celiac disease. The aisle where it was located had a big sign above it that said "DISEASES". I felt awful. It should not be labelled as a "disease" and I really hate the whole term "celiac disease". I usually just call it celiac but why can't they rename it?? I am glad my daughter who was with me can't read that well yet! Just needed to vent.
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Mommy to 2 Divas in Training
~6 yr old daughter positive Celiac blood test December 2010 (at age 4)~
~Positive Biopsy January 10, 2011~
~Gluten Free since January 11, 2011~


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#2 jjchenoa

 
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Posted 01 September 2011 - 09:22 AM

I was very annoyed and disappointed yesterday at the library. I was looking for Dana Korn's book regarding children and celiac disease. The aisle where it was located had a big sign above it that said "DISEASES". I felt awful. It should not be labelled as a "disease" and I really hate the whole term "celiac disease". I usually just call it celiac but why can't they rename it?? I am glad my daughter who was with me can't read that well yet! Just needed to vent.


In my book dis-ease is a perfect description! ;) I think the word has bad connotations that bring up all kinds of preconceived notions but it just means an organ that doesn't function properly or a condition that gets in the way of proper function. Our kids probably make less of a deal about the facts than how we as their parents react to the facts so if you explained the meaning to her she would probably shrug and accept what you tell her. I bet most people have or will have one disease or another.
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#3 bartfull

 
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Posted 01 September 2011 - 09:48 AM

Back in the mid 80's when Mom was diagnosed, it was called Celiac SYNDROME. I'll have to look it up...
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#4 Gemini

 
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Posted 01 September 2011 - 11:01 AM

I was very annoyed and disappointed yesterday at the library. I was looking for Dana Korn's book regarding children and celiac disease. The aisle where it was located had a big sign above it that said "DISEASES". I felt awful. It should not be labelled as a "disease" and I really hate the whole term "celiac disease". I usually just call it celiac but why can't they rename it?? I am glad my daughter who was with me can't read that well yet! Just needed to vent.



I couldn't agree more! This is one disease that a person has control over and you can turn it around 100%,without meds. How many other issues can that be said about? I do not lump Celiac under the same category as cancer or other problems which you don't have as much control over and requires difficult treatment to survive. I think it's a more positive attitude towards the whole thing.
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#5 Sarah Alli

 
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Posted 01 September 2011 - 12:28 PM

I had pretty severe asthma- unquestionably a disease- growing up. It never bothered me or made me feel inferior, it was almost a badge of pride for some reason. I had my special inhalers and breathing machines and could leave class to go to the nurse whenever I wanted!
I think you underestimate your daughter. She'll do just fine. After all, a disease is only abnormal functioning... and we're all a little abnormal.
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Sick and tired of being sick and tired.

#6 Takala

 
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Posted 02 September 2011 - 05:25 PM

It is an auto immune disease. There are trolls all over the media trying to pretend that it's a fad and a neurotic response to anxiety. They might be said to be having another sort of malfunction. I'd rather have this one than theirs.
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#7 Reba32

 
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Posted 03 September 2011 - 07:19 AM

call it anything less than a disease and people will treat it as nothing more important than acne, or a sprained ankle. Say "disease" and people will take it a little more seriously when you say you can't eat gluten. Call it a "syndrome" and it's somehow not life threatening anymore. Celiac *is* life threatening, and very worthy of the moniker "disease".
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#8 soulsister

 
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Posted 05 September 2011 - 05:23 PM

call it anything less than a disease and people will treat it as nothing more important than acne, or a sprained ankle. Say "disease" and people will take it a little more seriously when you say you can't eat gluten. Call it a "syndrome" and it's somehow not life threatening anymore. Celiac *is* life threatening, and very worthy of the moniker "disease".

I agree, when I recently told my friend that I had received the diagnosis of "Celiac" her response was .." oh, that's gluten sensitivity....that's no big deal". I told her hit is an auto immune disease, very serious and if I went much longer misdiagnosed, the result could have been potentially lethal. I only knew this because I immediately began researching Celiac once I got the biopsy results...I had never even heard of Celiac before.....come to find out, I have a first cousin with this condition! I am glad it is the ranks of "dis-ease"....and I would imagine with this particular "category", teachers will pay closer attention to the specific requirements for their students (when notified).
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#9 Gemini

 
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Posted 06 September 2011 - 11:33 AM

Back in the mid 80's when Mom was diagnosed, it was called Celiac SYNDROME. I'll have to look it up...


The reason some things are lumped as a syndrome and others are called diseases is because syndromes usually have symptom overlap so it can be hard to diagnose which problem you have. Many other autoimmune diseases, which are linked to Celiac, have the same symptoms as Celiac so that may be why it was once referred to as Celiac Syndrome. Sjogren's, Hashi's, Fibromyalgia, and Lupus all share symptoms and can be difficult to diagnose until symptoms become advanced. Maybe Celiac advanced to disease state when diagnostic tools made diagnosis easier and it could be defined better? I don't know but I still believe that classifying Celiac as a disease is overkill. I was deathly ill at diagnosis yet to think I completely turned things around after 3 years and all I did was go gluten free. No meds, surgery or prolonged treatment, except a dietary change. It never ceases to amaze me. I did develop other autoimmune problems along the way but they have gotten much better with each passing year gluten free.....not cured by any means but better symptom-wise.
I look at what people who are diagnosed with cancer have to go through and they still may not survive....that is far more daunting than Celiac.
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#10 Reba32

 
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Posted 09 September 2011 - 07:29 AM

undiagnosed and untreated Celiac is most certainly deadly. It can kill you, just like cancer can. It's a slow and painful death for sure.
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#11 shadowicewolf

 
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Posted 09 September 2011 - 08:27 AM

it is a disease after all (such things that can be deadly are classified as diseases).
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