national EGID awareness week

[AbbaRabbit]

Posted: 5/20/08 at 10:47am

this week is the second annual eosinophil-associated gastrointestinal disease awareness week.

these disorders include:
eosinophilic esophogitis
eosinophilic gastritis
eosinophilic gastroenteritis
eosinophilic enteritis
eosinophilic colitis
hyper eosinophilic syndrome
churg strauss syndrome
eosinophlic leukemia

EGID is the overgrowth of eosinophils, a type of white blood cell, in the digestive tract, blood and other organs. it causes people to develop numerous allergies.

people with the first 5 types of EGID either eat on a very limited diet or can't eat at all and survive on formula, such as neocate or elecare. some can't even tolerate the formula and must survive on IV nutrition called TPN. many of the people who have EGID need feeding tubes.

the other 3 are all different but it is thought that the cure would be the same for all 8.

EGID is both allergic and autoimmune in nature.

it is misdiagnossed as many things, including: ibs, ibd, celiac disease, and in older kids, an eating disorder.
the average time between onset of symptoms is about 3 years, but many people have gone much longer before finding out what's wrong with them and how to make it better.

social events, such as parties, weddings, birthdays, even going out to the movies or a ball game, can be very hard for people who have EGID and can't eat, since those events all revolve around food, and most movie theaters and sports places dont allow people to bring in their own "safe food".

the third week in may was officially named "national eosinophilic awareness week" by the house of representatives in 2007. it was headed by connecticut rep john larson and passed.



the following was written by a 16 year old girl who has EGID:

What if the only thing that is suppose to nourish you (food).. makes you sick?

WHY dont we know what causes this? OR the cure?

Why something so severe and can be fatal so un-heard of?

Those who are not fatal suffer from this symptoms:
Symptoms vary widely, depending on the area affected.
• Nausea or Vomiting
• Diarrhea
• Failure to thrive (poor growth or weight loss)
• Abdominal or chest pain
• Reflux that does not respond to usual therapy (which includes proton pump inhibitors, a medicine which stops acid production)-Reflux is an acid burp.. a burn in your chest and throat.
• Dysphagia (Difficulty swallowing)
• Food impactions (food gets stuck in the throat)
• Gastroparesis (Delayed emptying of the stomach)
• Anorexia (poor appetite)
• Bloating
• Anemia
• Blood in the stool
• Malnutrition
• Difficulty sleeping
& MUCH MORE.

How would you feel having a friend, child, significant other or even YOU had an Eosinophilic disease...?

But wait.. that's not it.

How would you feel if the doctors had no idea how to help.

What if they told you that you could no longer eat or drink anything but water. And they would most likely have to put a tube into your stomache to feed you with special hypo allergenic medical food so you do not starve?

How would you cope??

How would you help your friend cope??

This is a rising disease. We need to help get the word out before it gets you or someone you know.


if you would like to learn more about how to help those who have EGID, you can go to http://www.curedfoundation.org

http://youtube.com/watch?v=8GsCcoVGo3g