Scientific - and Magical!
Let Your Voice Be Heard -
Stories from participants in the magnesium clinical trial
by JoAnn Defrancesco, PXEer
This article first appeared in the June 2014 eNewsletter.
Initially I had decided that I was not going to sign up for the clinical trial testing magnesium supplementation as a treatment for pseudoxanthoma elasticum (PXE). I was confident that Avastin was going to keep me sighted for a long time. My skin changes are minimal and manageable. A cardiac calcium test done three years ago had a score of 0. I had little to gain, and participating in the trial would mean I'd need to travel from Florida back to NYC (where I lived until 2002) five times. There was also the inconvenience of multiple blood draws in between visits. So why bother, right?
And then a strange thing happened. I applied. My reasons for not participating in the trial were selfish, and I didn't want to be that way. Plus it would give me an excuse to visit my favorite museums and see old friends in New York.
And now - I am so glad I participated!
I remember being diagnosed at 13 years old. The only thing the doctor asked my mother is if anyone in the family had ever died from an aneurysm! I spent 20 years thinking that that's how I would die! And then PXE International was founded and I learned that wouldn't be the case. The news wasn't all good - I found that I had a 33% chance of becoming legally blind and that there was a higher risk of intermittent claudication, but it was better than thinking I would just suddenly "drop dead" and that there was nothing I could do about it. I wanted to do whatever I could to help the newly diagnosed, especially kids and young adults, from having these fears, and the clinical trial was one way I could possibly do that.
My initial cardiac calcium score at the start of the trial was a 5, up from 0 the prior year. Maybe we could actually learn something about the effect of magnesium on PXE from me. Maybe my score will stay at 5. Maybe it will go down to 0 again! How exciting to think that the last remaining fear of I have with PXE (calcification of arteries) could be quelled! How exciting to think children and others being diagnosed today may not ever have to deal with the same fears that I had for years.
The process itself is actually very nice. Dr. Jim On is professional and so sweet; seeing her is like visiting a friend. Getting to see Dr. Fuchs again is always a treat. I was a regular patient of Dr. Fuchs when I lived in NY and he's one of the top three things I miss the most about the city (the museums and public transportation are the other two). It’s great to talk with doctors who not only know what PXE is, but have studied it and made it part of their life's work. I've also had the opportunity to visit the Metropolitan Museum of Art three times and the Museum of Natural History twice during my visits. During my last visit I took the subway and went back to my childhood church; that is something I would have never done if I hadn't been in NY for the trial.
If the clinical trial were a "thing", it would be rainbow. It has scientific basis, but it is still magical .... and maybe there really IS a pot of gold at the end!