Jess -- Adhesions,Hirschbrungs Disease

From: cathy:- (anonymous@medispecialty.com)
Fri Jan 31 16:26:23 2003


Jess, I didn't know anything about Hirschbrung's until a friend's baby was diagnosed with it at 5 weeks old last summer. Those links that wing sent are really good. My friend has found a lot of support at the guardian society discussion groups. http://www.theguardiansociety.org/index.html

When I first did research on Hirschsprungs I winced and thought "uh-oh!" While Hirschsprungs is a congenital problem where the nerve tissue in the bowel doesn't form correctly, surgery and adhesions from surgery cause damage to the bowels that has a very similar effect. So people here really know what a terrible time your brother is going through.

The UK has an adhesion society analogous to the IAS. Their address is http://www.adhesions.org.uk You are in a much better position in Ireland than you would be in the US. Because the American FDA has far more hoops to leap through in order to get approval for things the most effective adhesion barriers are not approved here yet. It sounds like your brother's problems are severe enough that they require the best specialists, and I think that they are available to you there.

Good luck in your research. It is just heartbreaking to hear of such a little guy having such a terrible disease...

--
cathy :-)

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