Coping With PXE

By Karolyn Kells Ph.D.

When I was first diagnosed with PXE I was surprised. However, since I am a Registered Nurse I thought I would just look this strange disease up in my textbooks. Imagine my surprise when I didn't find but two small paragraphs about PXE. My physicians were not helpful. One told me that I could rupture my aorta and be dead before I got to the emergency room. Another doctor told me that I could be blind with only 24 hours notice. Of course I found out since then that these two statements were exaggerations at the least.

Needless to say, I was pretty shook up for a while. Now that I have educated myself and visited a physician that is familiar with PXE I am doing much better. But I found that I need to do some things for myself that help to keep my spirits up.

I find that I need to plan a few things just for me. There are three things that I find absolutely necessary. One is that I need to regularly be among people. So, I plan something every week to get me out of the house. For me, my religious activities frequently fill the need but often I go window shopping just to get out of the house.

A second thing that I find necessary is planned activity. My job usually involves sitting, so I plan regular swimming. This also helps me to be out of the house among people.

The third thing that I found necessary especially immediately after I was diagnosed was a support group. I found a wonderful group whose members have chronic illness. I went regularly for the first few months. Now ,1 find that I often go months before 1. check back in with them. Whenever I find that my eyes (angioid streaks) get worse, my PXE skin lesions grow or something along this order, then 1. check back in with this group. I haven't been back with this group for over a year. However, I know that 1. can return at any time.

These are just a few things that help me cope with an unpredictable disease such as PXE.