John V. Shufflebarger, M.D.
Dr. Shufflebarger is a 52 year old board certified hand surgeon from West Virginia. He is now at the University of Massachusetts Medical Center, where he has treated two people with a known diagnosis of HSAN-1, and he suspects that disease in at least one other patient. He is very interested in the pathology he has seen, and is planning to write an article about the changes in the hands of people with “congenital sensory nerve disorders”.
Dr. Shufflebarger has asked for photographs of the hands of people with sensory neuropathy. He wants to illustrate his article with “photos of patients with this problem at different ages and with different degrees of involvement.” He states, “this will help with recognition of the disorder at earlier stages and prevent the loss of tissue and function we see now. We can review the best preventative measures as well as diagnostic tools.” He also wants to address “surgical indications” for intervention. Some people have already sent pictures to him or to his associate, Marissa Matarrese. Dr. Shufflebarger has expressed interest in coming to the Deater Reunion, but before getting started on the article, Dr. Shufflebarger’s team would first need to get Institutional Review Board (IRB) approval from his hospital. This can be a lengthy process to insure that peoples’ rights and health are not violated by research. When approved, this study will give the Deater family an opportunity to participate in research that may positively impact the treatment of this debilitating disease.