Louise Adams Hess
It’s hard to believe more than two years have come and gone and our L-serine drug testing is coming to a close. We are anxiously awaiting the outcomes from our efforts. My effort seems trivial… taking the serine 3 times a day was not a problem (even though I don’t like the after taste and would prefer to take it in capsule form instead of the current powder that must be mixed with warm liquid to dissolve…hence the after taste!)
The 7 hour trips to Boston twice a year were sometimes hectic with traffic and storms but when we arrived we had a comfy hotel to rest ourselves prior to testing. The hotel is situated between the neurology offices and Massachusetts General Hospital (walking distance for those that could) where we had appointments for bloodwork and neurological workups. Once each year we had to stay a second day for more testing there and additional testing at the University of Massachusetts Hospital (UMASS) in Dr. Browns arena. These tests were rather unusual …sweat testing, tilt table testing and skin biopsies (that left its little pencil point size scar each time).
The best part of each visit was the potential to connect with a family member we had never met or hadn’t seen in a very long time. A connection we wouldn’t soon forget as we had precious little time to compare similar symptoms, shared problems and most importantly…how each one is over coming those problems! I always wish we had more time to do just that!
Well now you would think it’s over but we have been asked to continue with the study. I sincerely hope the funding is available because I think that this is working!!! I have had some positives that I think are directly related to taking the L-serine…first I had 4 fingernails grow back that I thought were gone forever and my fingers have opened up some (although still not straight) and I now have some sensation (for cold) in my hands and forearms. I thank God for the strides being made and pray the study goes forward.
I am extremely thankful to all who made this possible by funding this important study, integral to the understanding of HSAN1. From the bottom of my heart… Thank you!
Christine Deater Christensen
My L-serine saga begins with the flight from Denver to Boston. It would have been a nightmare to travel alone, but because the study paid for a travel companion to assist me, it was a joy. I also had the opportunity to visit with Larry and Rory, my brother and sister-in-law, every 6 months and that made the trip exciting. I think each of the coordinators that handled the appointment scheduling and testing did an awesome job keeping the patients and doctors happy. Not an easy task.
As for the L-Serine itself, it tasted like salt to me and was a chore to drink salt water three times a day, every day. But it must have done something because over the course of the study I got back a lot of pain sensation in my hands. I’m sure this was a good sign from a scientific point of view, but for me it just hurt. Since being off of the L-Serine, my pain has retreated to pre-medication levels and I am happier. I look forward to seeing the test results when everyone else is done. Hopefully there is some remarkable data.
The testing at UMASS and MGH was kind of fun for me. The tilt table, sweat test, nerve conduction and biopsy were interesting and did not bother me, though I know some people found them unpleasant. I absolutely loved Dr. Friedman and had lovely chats with her during her neurologic exams. I didn’t spend much time with Dr. Eichler but I’m glad for his participation in the study. I know we are all hoping and praying for an end to this disease, and if our part in the study leads to that end, what could be better?
I am thankful to have been part of the test group, and am thankful to be done with it. I appreciate all of my relatives affected and not, that make being a Deater so awesome. Our family is the best support group we could have, and I have become closer to some cousins through this process than I might have otherwise. Thanks to my siblings who keep encouraging me, and all the people working on a cure. I know some day it will happen.
It’s that time of the year again! Spring is in full swing and summer is right around the corner (writing this in early May). Of course, I live in Florida so there’s no such thing as seasons – just summer.
Here’s a quick update on the trial from my seat. The original 2-year trial was set to end in the Fall of 2015. At my visit last October, for the first time in forever I was actually able to feel the electrical pulses in my legs during the nerve conduction testing! How amazing is that?!? Does this mean the Serine is working? I’m not a doctor, but I’d say there is a good probability it’s doing something. During that visit, I was offered an extended 1-year “add-on” to the trial which I accepted. Not sure how that’s all going to play out since I have yet to be scheduled for my Spring visit, but at least the study has still provided me with Serine.
I wanted to also take a moment to talk about money. For the past many years, I’ve worked with my employer to apply for a grant from its foundation. This year the Enterprise Holdings Foundation has once again awarded a grant of $5000 to the Deater Foundation. I am humbled by their unwavering support for over 10 years now!
Many organizations have grant programs or employer match programs to direct funds to non-profit organizations. The Deater Foundation needs financial resources to continue helping fund research. Please consider discussing this with your company’s HR department and consider donating yourself!