Contributed by Stu Berman
Having been diagnosed in the early 1970’s, I have been a Gaucher patient for most of my life. Over these years, I have had the pleasure of meeting many GD patients, both at NGF meetings as well as other GD patient meetings at various hospitals. These interactions have given me the opportunity to learn about their experiences in relation to their symptoms and treatment.
As a result, I discovered that a surprising number of patients are not seeing a GD specialist, but relying on their primary doctors or internists for advice and guidance regarding their GD.
In my opinion, this is a serious mistake, for several reasons.
First, most doctors, whatever their specialty or qualifications, do not know what to look for in treating a GD patient. They are frequently unaware of the complications which GD can have, e.g., bone and bone density issues, the effect of GD on other organs, multiple myeloma, Parkinson’s, pulmonary hypertension, etc. As a result, these doctors do not know how to monitor GD patients for these or other possible complications.
Second, they are not familiar with the drugs available to treat GD, nor the proper dosage, frequency, etc.
Finally, they do not know what effect other medications may have either on the patient’s unique presentation of GD itself or on the GD medications used to treat it.
I have been fortunate to have been treated by several Gaucher specialists over the years, and am extremely grateful for their knowledge and care.
I urge other GD patients to find a GD specialist, and to seek guidance from the NGF if they need help in doing so.