My name is Jaime Recht. I live in Maryland but am a native of New York City. My sister and I were born in the mid-to-late 1960’s with Usher Syndrome Type 1F. One day when we were children, our babysitter took us to a movie theatre, and my sister and I grabbed her arms because we had trouble seeing in a dark setting. My parents then took us to many different eye doctors for opinions, and they confirmed that we have Usher Syndrome. The discovery devastated my parents as it was difficult for them to learn about our dual disability. Reflecting on my early childhood, I did notice that I did not see well in darkness or at night. When I told my parents about that, they told me I had “night-blindness.”
This past December, my sister and I flew to Iowa City, IA, for eye exams with Dr. Edwin Stone at the University of Iowa (UI) Department of Ophthalmology and Visual Sciences. The UI Hospital has one of the top rated Ophthalmology programs in the country according to US News and World’s Report 2015-16!
Brief information about our appointment activities.
- Initial reviewed our medical and family history
- Eye test for distance and reading
- Visual Field testing to measure how much we could see for both small and dim and big and bright lights.
- Blood work for genetic testing
- Small skin biopsy from the upper back of an arm. These skin cells are then made into induced pluripotent stem cells. These stem cells can be converted into photoreceptors that eventually will be placed back in the individual’s own retinas. Note that this type of Stem Cell Therapy is NOT from fetal stem cells or embryonic stem cells. It is directly from the patients’ own skin.
I am now 50-years-old. My visual field has gradually deteriorated. Individuals with Usher Syndrome will have different extents of visual field loss, depending on their age and other factors. No two people will have exactly the same disease progression. After my visit with University of Iowa Eye Clinic and Vision Center, I felt optimistic and confident that their research will bring a cure in the near future.