January 1 - Keeping Current

When I was first diagnosed with my particular eye condition, I read everything I could about it. Although I wouldn’t classify my condition as rare, it isn’t especially common either. My initial reading told me that my eye disease was inherent, and that there was no cure or preventative measures to stall further sight loss. At least I now had a name to what I was experiencing.

So, if there is no cure, why then is it important to keep current with recent research and developments? Because my eye condition is not common, I have found that not all eye health care practitioners are aware of it. In fact, initially I was misdiagnosed with another eye condition.  I need to be able to advocate for my self and to stay informed.

Unfortunately I have been a little lax about this as time has passed. However, a few weeks ago my sister Jill found a 2018 update on the Web. There is still no cure for PXE, but there was certainly more information than I had found in the past.

For instance, some of the symptoms that I have noticed in my physical health are actually connected to my disease. I have often laughed at the fact that doctors and nurses find it difficult to feel and detect a pulse in my wrist. Until the 2018 article I had passed this off as merely coincidental. Now I have learned that the phenomenon is related to poor circulation in my hands and feet and that is part of PXE.

More importantly, there are other possible adverse effects of my disease. While I haven’t experienced any of these, now that I am more informed I can at least be vigilant and watchful. I would not expect that my regular local physician would be immediately knowledgeable about the other aspects of PXE. For me, this is a good reason for me to stay current. I am the keeper of my own physical health. I need to be able to advocate for myself and to keep to date on research that might affect me.