Thank you Cassidy and Laura for another successful meeting. It was great to express our concerns, pain, sadness, and frustrations with other mothers who understand life with an EGID. Don't forget to find your recipes. We are pulling our resources and recipes together to hopefully help one another out. Who knows, one day we may have a cookbook!
Also, a special thanks to Cassidy for letting us borrow her cotton candy machine. I can't wait to Abigail's face when she takes that first bite!
Visual Insight To Life With An EGID
You Are Not Alone!
We started this blog as a support to those families in Arkansas and around the country who are faced with raising a child with a life-altering eosinophilic disorder. It has been estimated that one out of 3,000 people have been diagnosed with an eosinophilic disorder. Children suffering from eosinophilic disorders have a myriad of problems. Some of which include: vomiting, diarrhea, feeding refusal, malnutrition, difficulty swallowing, and failure to thrive, just to name a few.
Could you imagine a life without food? For these children, that is a very real possibility. Many of them are on a very restrictive diet of special elemental formula. Those fortunate enough to still be eating foods are very limited as to what they can eat, and still have to drink an elemental formula to maintain a nutritionally complete diet. Not only do these kids have a restrictive diet, but many of them have feeding tubes and endure several surgeries and procedures. These children show us parents incredible strength and endurance! It is our hope that other families dealing with this disease realize they are not alone, and that more people will become aware of this disease. Hopefully this blog will be a support to those living with eosinophilic disorders.
NOTE: House Resolution 296 passed in 2007 declaring the third week of May, National Eosinophil Awareness Week.
Could you imagine a life without food? For these children, that is a very real possibility. Many of them are on a very restrictive diet of special elemental formula. Those fortunate enough to still be eating foods are very limited as to what they can eat, and still have to drink an elemental formula to maintain a nutritionally complete diet. Not only do these kids have a restrictive diet, but many of them have feeding tubes and endure several surgeries and procedures. These children show us parents incredible strength and endurance! It is our hope that other families dealing with this disease realize they are not alone, and that more people will become aware of this disease. Hopefully this blog will be a support to those living with eosinophilic disorders.
NOTE: House Resolution 296 passed in 2007 declaring the third week of May, National Eosinophil Awareness Week.
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4 comments:
hi, i stumbled across this blog... my name is lauren. i'm 22 and have eosinophilic colitis with liver involvement, and they think i have eosinophilic cystitis as well.
i get elecare through my g tube and can eat a few foods.
i'll keep stopping by for more updates... great blog!
i also forgot to mention that i'm one of the co-presidents for the CT chapter of cured and out website is http://www.ct-eos.org if you wanted to work with us at all or just to check it out.
Lauren,
I am sorry to hear about your diagnosis, but WELCOME!
Hi! Thanks for posting on my blog and for the inspiring verse. Carter too has eosinophilic disease. He has eosinophilic esophagitis and moderate eosinophilic infiltration in his colon. I am so glad I found your blog!
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