Tuesday, February 01, 2011

Cystic Fibrosis

Patients with cystic fibrosis are somewhat unique. At Stanford, a special cystic fibrosis service takes care of adults with the disease, but on endocrinology, we've consulted on several of these patients. They aren't on a resident medicine service because the educational value is limited; CF exacerbations are treated with a highly specialized selection of antibiotics, patients often stay for a while, and management of the disease, although it affects every organ, is similar in every patient. Furthermore, cystic fibrosis specialists offer the patient more directed care than a general internal medicine practitioner would.

Of most of the diseases I've seen, cystic fibrosis is one in which the patient always knows more than the medical student or resident. It's strange because there are many chronic illnesses - CHF, COPD, arthritis, anemia - which patients have for years but know nothing about. But for some reason, cystic fibrosis patients know everything about their disease. They are often young, Internet-savvy, and invested in understanding their genetic condition.

The image shown above (Creative Commons Attribution License, from Wikipedia) demonstrates "clubbing" of the fingernails, a very common finding in cystic fibrosis. Sometimes, physical exam findings like this are interesting and educational; indeed, as a medical student, I followed a cystic fibrosis patient and learned quite a bit from her. But overall, after consulting on several of these patients, I think it is most appropriate that they are on a non-resident cystic fibrosis service.

2 comments:

daphnied79@yahoo.com said...

Craig, another endocrine disease where the patients know more than their doctors is Multiple Endocrine Neoplasia (speaking from the perspective of a UCSF patient)-- in this case probably because it is so rare? Also, it seems to be true of patients with Medullary Thyroid Cancer. We read about it a lot, and most of us live with it for many years and have a long time to learn about it-- at least this is true of those of us active in a yahoo group for people with this type of cancer. I had never thought about this before, thanks for bringing it up. But as soon as I was diagnosed I spent months trying to get my hands on as much primary medical literature as possible.

Craig said...

Yes, you're right. MEN syndromes are pretty rare and involve a group of endocrine organs that do not immediately spring to my mind as interconnected.