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Patient: Sometimes I Feel Like My Doctor Has Never Seen Adult Neuronal Ceroid Lipofuscinosis Before

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I recently moved and started seeing a new doctor, Dr. Aidan Nord. For the most part, he’s been great, but I continue to be bothered by one minor concern: Sometimes I feel like he’s never seen Adult Neuronal Ceroid Lipofuscinosis—a condition I’ve battled for a decade—before.

I realize it’s an insane thought, as I’m sure ANCL (pronounced “ankle”), as those in the health care biz call it, is taught on day one of medical school and then seen in live patients throughout the clinical years. It’s just that something seemed off during my first visit with Dr. Nord when I explained to him that I had ANCL. He just stared at me blankly for a while and then pulled out his IPhone. He claimed he had an urgent text to respond to, but I could’ve sworn he was googling “adult neuronal ceroid lipofuscinosis”.

I know, I know…I’m being paranoid to even think he was using Google to learn about a medical disorder he must have learned about years ago. It’s just that he asked me how to spell “ceroid” and “lipofuscinosis”, words any 3-year-old could spell.

Anyway, he was probably just joking. I mean he’s board-certified—he couldn’t possibly have passed the board exam without knowing how to diagnose and treat ANCL, right?

I won’t bore you with details about my disease; after all, this is a medical website, so I’m sure all your readers already know everything there is to know about ANCL. But I’m a little concerned about Dr. Nord. When I asked him to check the status of my specific type of ANCL, he didn’t seem to know that he should order an enzyme assay for the activity level of cathepsin F—I mean, can you imagine? Must have been an off day.

What do you think, GomerBlog? Do I have a right to be worried about my doctor’s level of ANCL knowledge?

—Cer-iously Concerned about Clinician’s Ceroid Comprehension


Yes, you do. Please find a better doctor, one who knows every single detail about each of the estimated 100,000 human diseases. We happen to know of two such docs: Dr. UpToDate and Dr. Google. Start there.

Of course, we here at GomerBlog also know everything about every disease, including your neurometabolic disorder with a prevalence of 1 person out of 6 million. We promise we did not just look that up at: https://rarediseases.org/rare-diseases/kufs-disease/

Nope, no way. We’re just providing the website for everyone else.


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