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Crohn's Disease Forum

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May 17, 2011
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Okay parents...Our local news station is doing a story on Ethan about Crohn's disease.
What are some of the important things that people should know about Crohn's disease? They are doing the segment on my son Ethan to raise awareness about Crohn's in children and adults.
 
Wow Ashley! How cool is that...:thumleft:

Just off the top of my head for now and some of these will be pretty obvious:

It is an autoimmune disease that strikes most sufferers as teenagers and young adults or, as in Ethan's, very much younger than this. It therefore often strikes at a time when a child's growth and development are at a peak.

It is a chronic, incurable disease but many people, with appropriate treatment, can go on to lead normal lives.

Inflammatory Bowel Disease is NOT Irritable Bowel Syndrome.

Crohn's disease is a hidden disease in many ways. It's not only that you can't see it but there is very little awareness of it in the public eye and this also extends to a large degree into the health field. Many sufferers go undiagnosed for lengthy periods of time and this impacts significantly on their ability to function on a daily basis.

There are many extra intestinal manifestations associated with the disease.

This is a complex disease that still has much to be discovered about it. There are many misconceptions about it like...just change your diet you'll be right, so if you take a tablet everything will be fine, it's just a stomach thing you can't be in that much pain...

Weight loss is a symptom for many people and when it strikes young females an added burden that confronts them is the hushed and whispered suggestions of Anorexia.

Crohn's disease is just one part of the person, not the whole person.

Dusty. xxx
 
Weight loss is a symptom for many people and when it strikes young females an added burden that confronts them is the hushed and whispered suggestions of Anorexia.

...or worse, drugs!

Congrats, Bumpkins -- this is wonderful in terms of awareness. I wish more local stations would pick it up.
 
...or worse, drugs!

Congrats, Bumpkins -- this is wonderful in terms of awareness. I wish more local stations would pick it up.

I hate when people ask what is wrong with him!? There is no way he is 18 months old is another one. People telling me what I should feed him to fatten him up. I suppose when you get older and have Crohns people have even more assumptions...
 
People do need to be educated. I spent quite some time trying to educate teachers. The principal had crohn's and you would think, she would have had some understanding but NO! One of his teachers kept telling me that I needed to feed him...really? He spent most of his junior year not in school and when he was there, he needed a free pass to the bathroom. Teachers balked. Short of a law suit, they complied. We had a great doctor!
Everyone's Crohn's is different...that's what I really wish people understood. It can change quickly and sometimes without warning. Also, it is no longer considered a "jewish" disease.
Thank you for your bravery to allow the news into your life.
 

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