Eric Newcomer, DFI President
One of the aspects of the Deater Foundation that I am the proudest of is that we provide a platform where everyone can relate to HSAN1. Whether it be researchers, students, donors, family, affected and non-affected, involved or just interested, our website is a place where we all can share success, break-through’s, difficulties, ideas and even find information to share with our own doctor’s. For those who might not know, this disease affects its’ victims in their own way, for some it is their feet and legs, others their hands, still others their eyes, but each person has to deal with the symptoms in their own way.
Surgical Option for Finger Contractures
In the 2019 DFI newsletter there was an article about how Paul Clemow was happy to report that an “FDS to FDP” transfer was helping him regain flexibility in his fingers. I printed a few copies of that article and took off to find an option for myself. Over the years my finger contractures progressed slowly, and I was able to adapt the use of my hands slowly, too, to match the changes that occurred, and I was able to work through it. The danger was that in the crevices of my fingers the skin was soft and would tear easily. In a matter of seconds I could rip the skin, sometimes to the point of exposing the tendon, opening up for infection to set in.
Once I got an infection it affected everything, my teaching, my work around the farm, the pain and the amount of time it would take to heal such soft and often damp skin. Numerous doctors agreed that what worked for Paul would not work for me and their best option to prevent those dangerous tears was to amputate below the second knuckle, my answer was a resounding “no thank you!”. I was eventually referred to the Philadelphia Hand to Shoulder Center and Dr. A. Lee Osterman, a world-renowned hand specialist, who agreed that what worked for Paul would not work for me, but he had another idea. His idea was to straighten and fuse my pointer and middle finger with a screw, and then wire my ring and pinky finger joints into a slightly curved, gripping, position. Then he wanted to take the Flexor Digitorum Superficialis, the same FDS that was used in Paul’s surgery, from my ring finger and reroute it to the Intrinsic Flexors/Opponens of the thumb, thus restoring the three jaw chuck and pincer pinch grip of that hand. After two surgeries, one in November and another in December, I had to reteach my brain that what used to make my ring finger bend now pulled my thumb over to a more usable position, think of it as making a cup in the palm of my hand. That was all on my left hand and I had planned on doing my right hand the same way as soon as college was over for the spring semester but, due to the COVID-19 pandemic that surgery has been postponed.
I tell my story because, like I said before, not everyone is affected the same way so the treatment for everyone might not be the same. Maybe something that worked for me would spark an idea to help you or to have your doctor help you. We create a better team when we can share our experiences. You see it every year in the Deater Foundation newsletter, ideas, suggestions, personal experiences, and stories that uplift and inspire hope. As a family we have been doing this for generations, but I am extremely proud of this group of individuals who have come together and helped, really helped, people from all around the world.
Of course, the Deater Foundation cannot wholly operate on hope, we need your support. I know that the economy isn’t the best right now and unemployment is rampant but if you are able to give the Deater Foundation would greatly appreciate your gift and I know that the DFI board of directors works diligently to use those donations to make the greatest impact possible towards finding a cure for this disease. If you are unable to make a monetary donation please consider helping in other ways, like sharing a story, sharing the website (deaterfoundation.org) or even just liking and sharing our Facebook page (Deater Foundation, Inc), who knows how far we can reach and how many people we could help just by you sharing.