Let Your Voice Be Heard -
Stories from participants in the magnesium clinical trial
by Mary Ann Thaman, PXEer
This article first appeared in the June 2014 eNewsletter.
Hi, my name is Mary Ann, and I have been participating since February 2013 in the clinical trial at Mt. Sinai in New York City testing magnesium supplementation as a treatment for pseudoxanthoma elasticum (PXE). The study involves taking a magnesium supplement or placebo the first year, and the second year the magnesium supplement. There are a series of tests, none of which have been uncomfortable and the clinic is extremely efficient and friendly. I have been to New York in wonderful summer weather and not so nice winter weather, but all trips have been an adventure and I would recommend it to everyone. My husband has gone with me three of the four times, and I only had to persuade him to go the first time. He has enjoyed the city, when he had no desire to ever go in the past.
I was diagnosed with PXE in 2001 when my sister experienced a severe retinal hemorrhage in her dominant eye. The ophthalmologist recognized the skin lesions on her neck as PXE and referred her quickly to a retina specialist. Unfortunately at that time the treatment was a form of laser, and she lost all of her central vision. She was left with little peripheral vision, which has been difficult for her to use. Over the next several years I watched her battle retinal bleeding and struggle to keep the vision in her other eye. The eye treatments had progressed but were not as we know today with Avastin and Lucentis injections. And at that, these are treatments not specifically developed to treat PXE. I searched for resources to help her and PXE international was one, along with our local association for visually impaired. I found myself searching to find any way to help her and to try to understand this disease process. I learned much from PXE international newsletters and educational offerings.
After years of reading the monthly eNewsletter, I read about animal studies and then in November of 2012 I saw the announcement of the magnesium supplement study in New York. I was so excited to see a study finally that pertains to PXE itself. I immediately felt it was something I wanted to do. I saw it as a way to possibly advance the treatment of PXE, help myself and my sister, and bring benefit to all those with PXE. Prior to and since starting the study, I have had some visual changes myself requiring treatment, and this study has given me hope for a specific treatment. So I contacted the Mt. Sinai School of Medicine and was gratefully admitted into the study.
PXE International asked me this question: If the Mt. Sinai clinical trial were an object, what would it be and why? My answer was that this study would be a symbol of hope. The symbol I have recently found and love what it represents is "The Hope Tree." Here is the link if you are interested in what I found intriguing: http://www.thehopetree.com .
I would be privileged to participate in any future trials if at all possible. To be a part of this process, even if it is an early step in what the future treatment may evolve into, is an honor for me. I am happy to talk with fellow participants and PXEers about more detail of my experience if you'd like.
Best to all!