Making History of PXE: Elizabeth Terry's Experience of the PXE Clinical Trial


Elizabeth Terry getting a neck ultrasoundElizabeth Terry getting a neck ultrasound
Skin biopsySkin biopsy
Bone density scanBone density scan
Wayne Fuchs eye examWayne Fuchs gives Elizabeth Terry an eye exam
Lisa Haugsted and Elizabeth TerryLisa Haugsted and Elizabeth Terry
Elizabeth Terry and Doreth BrownElizabeth Terry and Doreth Brown

Additional reporting on the clinical trial of magnesium supplements in the treatment of PXE.


May 4, 2013
by Elizabeth Terry, former Executive Director of PXE International


When I first heard that the PXE community was finally getting the chance to become part of a clinical trial, it just brought me back to the first time I ever heard the words Pseudoxanthoma Elasticum. I was 5 years old and I didn’t understand what it all meant but I knew it was a moment. A moment that changed everything. This trial is another moment. It may just feel like a pill every day but it’s progress, it’s history in the making, it’s making history of this disease.

 

 

In early February 2013, my family and I headed to Mt. Sinai School of Medicine in New York City to start the process of my participation in the magnesium supplement clinical trial. I didn’t quite know what to expect but I was excited to be a part of something that could potentially help everyone.

 

 

We were greeted by the doctors running the study. After an initial exam, I was pregnancy tested and informed that I would have to pee in a jug for the next 24 hours. This was news to me and not great news since not only did I find that pretty gross, I had also made plans to see The Book of Mormon that night. The thought of carrying a pee jug into a broadway theater didn’t really appeal to me. Luckily it wasn’t as gross as I thought it would be and I was able to avoid needing to go during the show.

 

 

I then had blood drawn to check for my current levels so that they could establish a baseline and make sure I wasn’t in kidney failure or anything like that. The next procedure was an ultrasound of my neck. It was a bit cold but didn’t hurt and it was pretty cool seeing how the machine worked.

 

 

After that was the piece I was most looking forward to: the skin biopsy. I am not at all good at seeing surgery performed, so I knew I had to look away. She numbed the area of course so I couldn’t feel it at all but knowing it was happening was enough to send me over the edge a bit. Luckily they had some gatorade for me to drink after it was over so I could recover and not pass out. I’ve spared you the more gruesome pictures.

 

 

After I didn’t feel light headed anymore we went off to get an MRI. This procedure was in another building so we had to get ourselves down the block. I’d never had anything like this done before but I’d seen them done on a lot of medical TV shows. It was very fast and the technicians were all very nice.

 

 

After that was finished I went to yet another building to get a bone density scan. When we arrived we were told that we’d missed our appointment which had been made for way earlier in the day. We weren’t told about this appointment time and my piece of paper that told me what to do had us early for our appointment. So we waited around for a break in their schedule. There was no cell phone signal in that building so contacting the people running the study was problematic. While we were waiting we ran into Lisa Haugsted from North Carolina, another PXE family member!

 

 

Finally they had time to do the scan and we got it done. Then we jumped in a cab and headed to the last appointment of the day! It was with Dr. Wayne Fuchs who is one of the nicest guys you’ll meet and it was wonderful to end the day with him. He took lots and lots of pictures of my eyes and gave me yet another injection. This time it was dye so that he could see different things in my eyes. After we finished with him we ran into yet another PXEer, Doreth Brown!

 

 

By the end of this long day, my eyes were dilated, my arm had a puncture biopsy, blood was drawn, and dye was injected. I felt like a pincushion but I had to keep reminding myself that this was all for a good cause and it was important. Running into others participating in the trial also helped keep my spirits up because it reminded me how important all of this is and of all the amazing work that we are all doing together.

 

 

The next day we went back to the starting point (with my jug of pee) and were given a big jar of pills. I don’t know if they’re real magnesium or just placebo but I’ve been taking two a day for the past 4 months and I suppose we’ll see what happens!

 

 

Elizabeth Terry