PXEer Stacy Duppong writes her story for Inspired Woman magazine

 

by Stacy Duppong, PXEer
"Surviving Pseudoxanthoma Elasticum (PXE)" first appeared in Inspired Woman magazine, April/May 2014
The introduction below first appeared in the June 2014 eNewsletter.
 



Stacy Duppong (front row, middle) on the cover of the April/May 2014 issue of Inspired Woman magazine
 

About a month ago I was asked to tell my story of pseudoxanthoma elasticum (PXE) in our local magazine called "Inspired Woman". I was so excited to do this because awareness means so much to me, mostly because it took a few years to get my PXE diagnosed.

I don't have a real noticeable skin issue like some. Mine all started with the wacky vision. It seemed like it all happened so fast for me. One day I was normal and the next I was having a bleed in my right retina.

The problems just seemed to escalate from that moment on. Seeing the retina specialist every two to four weeks is now my schedule. At first I was getting injections monthly in my right eye and then it happened to the left eye. It hit my left eye really hard. It's the bad eye now as I call it. I look at the Amsler grid and only see about a fourth of it.

The frustrations come and go. I learned from a good friend of mine, who lost her sister to cancer, that she only allowed herself a half hour a day to worry, talk, social media or even think about this disease or it will take over your life. So far it's working very well. I don't want PXE to run my life I want to be the one in control.

I treat all the other issues as they come up. I just had a rhizotomie on my legs (burning of the nerves) to help the leg pain. I feel so amazing after I have this done that I can walk much easier without being in so much pain with every step I take. Every one of us that has PXE seems to deal with it in a different way. The one thing that I have changed is my diet and trying to become more healthy overall. I just keep a lot of faith in God that he will be by my side and walk this journey with me. 

Stacy


Read Stacy's story, "Surviving Pseudoxanthoma Elasticum (PXE)", in Inspired Woman magazine