Do You Feel Like Your Physician Has Educated You Enough?

Or do you have to go on long internet searches to get the hows, whys, and what's next about Amyloidosis?

Things have come a long way since I was diagnosed 10 years ago, and a physician at the hospital where I worked excitedly said to me that I was the first primary amyloidosis patient he had ever met. Gee thanks. My amyloidosis diagnosis came TWO years after I was found to have restrictive cardiomyopathy. The cardiologist did not think about amyloidosis as a reason for it, and I certainly had never heard of amyloidosis. I think there is a raised awareness about amyloidosis today among physicians, but probably still not enough.

I also found that even after years of knowing I had restrictive cardiomyopathy, I didn't really know the ins and outs of that disease. I later realized that it was not clearly explained to me.

I was warned by one physician to not go on the internet and read all about the disease because it would just scare me more. Sure, one must be selective about what are the sources of medical information, but I feel like I had to go online to really get the picture. Thank goodness we now have the internet as an alternative source of information.

That's a great question, one that I'm sure has occurred to most people who have a rare disease. Imagine what it must have been like before the internet!

It will be interesting to see what the others have to say!