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Anyone living long-term with DIPNECH on lungs?
Neuroendocrine Tumors (NETs) | Last Active: May 13 7:20pm | Replies (77)Comment receiving replies
@nvent5
Good to hear your cough is gone. And good to hear about Dr. Merrick’s study. Cleveland Clinic also has a DIPNECH program. It’s rare but likely underdiagnosed since most doctors have never heard of it so most of us were misdiagnosed for years. More awareness means people will be diagnosed and helped faster. The more prevalent it is, the more research dollars will be spent. That’s good news for all of us DIPNECHians. 😊
Replies to "@nvent5 Good to hear your cough is gone. And good to hear about Dr. Merrick’s study...."
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@californiazebra definitely understudied. I am told it’s believed to be more widespread than originally thought. It also seems to be more researched in Europe than the U.S. I suspect there is a genetic component as well, but we will see what Dr. Merrick’s study shows. I think a big problem is that DIPNECH does not have its own diagnosis, making it difficult to track.