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What research is being done in the field of children's interstitial lung disease? |
Does anyone know about the Children's Interstitial Lung Disease Foundation (chILD Foundation)? My daughter suffers from the chILD disorder NEHI. I too am Mom to a baby with an ILD, and I too am online looking for answers. I know how frustrating it is to read all sorts of stuff that really just does not apply, hoping to pick out the sentence or two in the entire article that does. Probably the best place to go for answers and support that I've found is the yahoo group, InterstitialLung_Kids. There are other NEHI parents there as well as other interstitial lung diseases (surfactant deficiencies, PIG, bronchiolitis obliterans, follicular bronchiolitis, diffuse alveolar damage, LIP, unknown ILD's, and bronchopulmonary dysplasia, I'm probably leaving some out too), and even a link that will take you specifically to a NEHI group. A lot of the kids are oxygen dependant, most have some degree of reflux, and many have feeding tubes, have had fundoplications, etc. It was nice for me to just find others who can relate. As far as research goes, the chILD foundation site can tell you more about that, but I know there is talk about doing specific research in the NEHI, Pulmonary Interstitial Glycogenosis (PIG), and Surfactant Deficiency categories. The Rare Lung Disease Conference in Cincinnati was held in April, and doctors from all over met with some of the families and put their heads together then. I did not attend, so I cannot tell you more, but there are parents in the group who did. You might want to check it out. Come visit the link http://health.groups.yahoo.com... The chILD Foundation at www.childfoundation.info has information and links for children's interstitial lung disease. Report It eMedicine - Children's Interstitial Lung Disease (ChILD) : Article by James S Hagood, MD |
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