Israel

שגריר תסמונת אשר בישראל USH Ambassador for Israel

The USH Ambassador for Israel is Leah Herzog.

לאה הרצוג ambassador.isr@usher-syndrome.org 

A Little Bit About Me

When I was 18, I had a minor fender-bender (yes, I had a driver’s license!) that eventually led me to Dr. Berson at Massachusetts Eye and Ear Infirmary (MEEI) and a diagnosis of retinitis pigmentosa (RP). We didn’t know the genetics or the origin; neither of my parents nor any other close relative had been diagnosed with RP.  Because my hearing was fine, and because there was no test yet for Usher, it wasn’t raised as a possibility.

All told, I lived a pretty “normal” life for the next 18 years, which means I basically didn’t acknowledge my RP.  (I’ve come to understand that this is pretty normal-yet-not-normal behavior!) I married, moved from NJ to Chicago, where I worked as a high school teacher and obtained an M.Ed. in Educational Psychology.  We moved to Cincinnati, where I continued to teach and work as a guidance counselor, and did a second Master’s in Educational Leadership.  We struggled with infertility, but after 9 years, had our son, moved back to NJ, and eventually had our daughter.

In 2000, at 36, I stopped driving.  I was working full-time as a teacher, department chair, and guidance counselor.  I was a mom to two young kids and living in the suburbs; not driving was both a challenge and somewhat of a social game-changer.  But we managed; I mostly just kept on acting “normal”; I didn’t really acknowledge my deteriorating vision, especially not in my professional capacity.  I still read bedtime stories to my kids, until I’d memorized them or they could read them to me. Large print books were a huge game-changer, as was ZoomText and other digital media. But eventually, I needed people to read my students’ exams to me, and memorized all the material I needed to teach. There were no coffee tables in our home, my kids’ nicknames became Rex and Rover, and they and their friends knew not to leave toys on the floor. My husband, some friends and Uber filled in the driving gaps, which were often pretty large. 

At 45, I got my white cane, but didn’t use it for a few years, except when I was in Manhattan.  At about 50, I noticed that my hearing was wonky–I sometimes couldn’t hear a student even at only a few inches away.  I had my hearing checked, but was diagnosed as “borderline” and having a “processing disorder.” It was only in 2017, when I was 53, that I was tested and diagnosed with Usher, after my son did a general panel of genetic screening geared for Ashkenazi (European) Jews, when he was in college. “Mom, I’m a carrier for Usher,” he told me. The geneticist explained that this was why I wasn’t blind.  “But why aren’t I deaf?” I asked.  She didn’t know. “God’s grace,” was her answer. 

I have Usher 3A, CLRN gene, autosomal recessive.  My kids are carriers.

 

My husband and I moved to Israel in 2019; my daughter had already moved and my son came in 2022.  I use my white cane all the time and now have hearing aids.  I work mostly from home and on Zoom as an educator and counselor in various capacities, and am also a writer,  I am familiar with many rights for the disabled in Israel, and am becoming more involved with the RP and Usher communities. I don’t sign in any language; I identify more with the vision-impaired than hearing-impaired communities because my visual disability has always been dominant. 

My hobbies are reading–with my Kindle app on my phone–crocheting, music, and being outdoors in nature.  A good cup of coffee, glass of wine, or assorted alcoholic beverages, together with some good cookies, muffins, or pie, or some good ice cream (hard to find in Israel) or chocolate, are great pick-me-ups for me. Best of all is time with friends and family.

I am a people person, a helper. I would love to connect with, support, and educate people about their rights, and about what it means to live with a disability (and in a new country and in multiple languages at that!) I am eager to help in any way I can!

Contact Leah at: ambassador.isr@usher-syndrome.org

משאבים Resources

מיצוי זכויות Exercising Your Rights

ציוד Equipment

מכונים ומטפלים Institutes and Therapists

כלבי נחייה Guide Dogs

מדיה Social Media

שיקום, חברה ותרבות Rehabilitation, Society and Culture

חוקרים בישראל Researchers in Israel