helping each other and other

[Guest guest]

We are new to this diagnosis of ee/eg. But every step we take with every

health care professional leads us to one more delay, and waiting for one more

test. The stress is overwhelming. I do feel much of these delays are because

the medical community is so unfamiliar with this disease process and effective

interventions. It is as if they just cant believe the diagnosis, and they are

so unwilling or unable to bring the nutrition aspect into it.

Has anyone who has a doctor who works with those with ee/eg talked to them

about forming an official support group? I just cant help but think we are

all to some degree repeating the efforts of those of you who have gone before

us and found some sort of relief. I would love to see a group formed with

doctors, nutritionist and others who know what ee/eg is that would reach out

not only to patients and their families but to other doctors who need this

info. I think this is realistic, but I am not as familiar with this as

others. Any thoughts? Patty (mom of , 12, ee/eg)