HAPPY NEW YEAR

Another year has almost passed. Researchers all over the world try to find solutions to find a therapy for the still incurable Usher Syndrome.

One of my highlights this year as a patient was my visit at a lab in Boston (Boston Childrens Hospital and Harvard Medical School). Dr. Gwenaelle Geleoc and other researchers work on a very promising research project on USH2A. I visited Gwenaelle in her lab to meet her and her team in order to get to know them better. So far, USHER BRIGHTNESS supported the project a little bit with a generous donation of EUR 1065,00 by my Grandma, Hedwig Heimann. I will keep you updated.

In case you would like to donate to the project, please let me know by mail: laura@ushrbrght.cc

Happy New Year!!

Gwen and me in her lab in Boston

Vamos a la playa

State street on Memorial day, Santa Barbara

A piece of Santa Barbara's beauty

SANTA BARBARA. Summer time and the beach. I walked down state street with all its cute little shops until I arrived at the beach. It was a bit windy but still warm enough to lay down on the bright sand.

The sun is shining and I was walking around with my sunglasses. The night blindness is immediately present – as soon as I put on my sunglasses, it affects me as if there would be dusk and my tunnel vision gets worse. I need to be really careful what I'm doing and who's around. But I love wearing them so it's worth it for me to spend some more energy on watching out for obstacles. 

The more people around, the more difficult it gets of course. Same with my ears. To go into the water and lay down on the sand I almost always put off my hearing aids. I carry them in a little box in my bag so that they cannot be destroyed by sand or water.

Back on state street I entered a hat shop. As I came from sunny outside, it seemed to be totally dark inside. With my susceptibility to light, my eyes need to recover for at least 5 minutes until I'm able to see in a normal way within the new light situation. This can be really annoying as soon as I even have to sit down or just stay still for a while to not ran something over. The only thing I saw when I entered the shop was a "black wall" right in front of me. For minutes. 

Anyway, the shop was great and I bought a hat!

Face your shadow

Statue of Liberty

One World Trade Center

NEW YORK.  As I'm doing this US trip on my own it's sometimes just my suitcase and me. After I already saw a bit of VA, DC and PA, my next stop was NY. I arrived during the day time. That's what I always try to arrange at places that I don't know well. My night blindness starts with the dusk.

I stood in the main hall of the Grand Central Station and planned to visit a friend downtown. I struggled to walk from one side of the hall to another. There were so many people crossing my way from every direction. My tunnel sight made me feel very insecure and I walked more slowly.

Anyway, I finally arrived at "The Setai" and went to the roof top of the building with my friend. The sun was out. When I saw my shadow on the floor I thought of facing my disease. I accepted it, turned around and enjoyed the wonderful view over downtown Manhattan. I mean, I can still see it.. Cheers!

Imagination?

Welcome everyone!

In this blog I try to give you an insight, how a life with the Usher syndrome can look alike.

As I found out, it is really hard for people who aren't affected to understand a persons restrictions through the Usher syndrome. 

At the moment I am travelling through the US - a.l.o.n.e - which means a lot of unexpected situations and unfamiliar areas are up to come.

Through my Facebook page you are always up to date, on the Fanpage there will always be the link of new blog text.

Here a short insight of the places in the US that I’ve already visited - stories will follow:

Germany meets Japan in PA,USA

​Enjoy!

Oh Helen Keller.. Washington DC

Face your shadow - NYC