Angiomyofibroblastoma, how to detect the rare disease?

19 October 2019 1 1K Report

Angiomyofibroblastoma is a rare disease, unknow by many doctors. Is there any specialist who can inform me how to convince a doctor to take a look on this disease, or what to focus on - in terms to get treated. The patient / doctor relationship often don't allow the patient to be the one who bring new information on the table.

Robert Boer

Dear anonymous, I have only some non-expert advice:

If a patient concludes that the relationship with their doctor does not allow for bringing in relevant information, then it seems best for the patient to find another doctor.

Before that conclusion, I would suggest that the patient asks the doctor: why do you think that it is not ...?

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