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UR Medicine


Patient Stories

Below are quotes from actual patients that have worked with the CMT Clinic:

  • I began experiencing a collection of symptoms that were neurological.  My son also started with some of the same symptoms and my family was looking for answers.  We decided to venture to University of Rochester Medical Center and see Dr. Herrmann which is a several hour drive from our home.  Dr. Herrmann was able to notice that our symptoms were different from most CMT patients.   My family and I became enrolled in Dr. Herrmann’s innovative research and as a result were able to identify a new rare neuromuscular disease.  Dr. Herrmann’s expertise and dedication with his research study was able to allow him to identify a mutation in a gene that was never before associated with CMT.  Without Dr. Herrmann and the CMT clinic I may have never been diagnosed properly and I can’t thank them enough for all their service to myself, family, and others.
  • One day I found an article about Dr. Herrmann’s involvement with a research study for Charcot-Marie-Tooth (CMT) patients and high doses of Vitamin-C.  I reached out to Dr. Herrmann’s staff to see if I could participate in the research study.  I was not able to participate in this study, but they were still very interested in having me be seen by Dr. Herrmann.  Ever since that phone call I have been coming to see Dr. Herrmann and his staff in the clinic.  I am also now involved in other research studies of Dr. Herrmann and really enjoy speaking with and seeing his research coordinator, Janet Sowden.  Being involved in Dr. Herrmann’s research studies is very important to me as my father had CMT, my son has it, and I have several other family members who are also diagnosed with this disease like me.  I really love all the staff in the clinic and find that they are always willing to listen to me.  They are very attentive to my needs and always just a phone call away to answer my questions. 
  • My father was researching CMT studies and clinics near our home and found Dr. Herrmann about 4 ½ years ago. He first saw Dr. Herrmann in the CMT clinic and told me about his experience. I decided to travel to the CMT clinic as it is a 2 ½ hour drive from my home. After, my experience with Dr. Herrmann and his staff I decided that I also wanted to have my daughter followed in the clinic. The staff takes the time to listen to us and provides great care. My father, brother, daughter, and I are also enrolled in Dr. Herrmann’s research. Dr. Herrmann’s team helped discover the genetic cause of our family’s form of neuropathy.