Monday, July 28, 2008
Infantile FSHD Patient Clinic Day
8:00 a.m. – 5:00 p.m.
Infantile FSHD Clinic at the University of Iowa Hospitals and Clinic Katherine Mathews, M.D., and Clinic Staff
Clinic Overview
The early onset (infantile) FSHD clinic to be held at the University of Iowa, Department of Neurology, in Iowa City will offer the opportunity to meet with specialized staff with experience in treating patients with FSHD. Personnel at the clinic will include a pediatric neuromuscular physician, neuromuscular nurse/genetic counselor, speech and hearing specialists, and physical therapist. Through collection of information from families prior to the clinic, the clinic experience will be tailored to insure that issues of greatest interest are addressed.
The clinic is open to persons with FSHD who are 20 years of age and younger who experienced weakness (excluding those with isolated face weakness) by age 10 years. Patients (or parents) will be asked to complete a short medical history which will be mailed prior to the date of the clinic. In addition, selected medical records including DNA results, recent physical therapy, speech pathology, audiology, and ophthalmology notes should sent to the University of Iowa prior to the date of the clinic, if possible.
Anyone interested in more information about the clinic should call Carrie Stephan, R.N.,
(319) 356-2673 or
e-mail: carrie-stephan@uiowa.edu.
