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Monday, 24 November 2014 00:00

Usher Blog From A Dutchie

Hello! My name is Rick Brouwer, I am 49 years old and I live in Vlaardingen; a city near Rotterdam in The Netherlands. In the foto (left) you can see me running with a buddy. Yeah, that is also possible even when you have USher Syndrome!  On 15 November at 7pm, 7 UShers together, participated in the 7 km night marathon over the  7 hills of the city of Nijmegen and I was one of them. It was an amazing  experience. We Ushers had not only our buddys, families, neighbours and friends running with us but also doctors from the Radboud hospital. This was our first campaign to raise funds to support further scientific research on a hopeful therapy for Usher Syndrome type 2a, which has already started at the Radboud hospital. I will tell you a bit more about it but let me first share my own story. 

The first time I heard of Usher Syndrome was when I was 18 years old. My sister who was 14 years older than me got diagnosed with Usher Syndrome. Due to the fact that I was already wearing hearing aids, my brother in law and my sister asked me to get myself tested too. At that time I was in denial and I refused to believe that I could even have Usher Syndrome. Six years later at the age of 24, I was  driving my car and I almost caused an accident. This was a sign for me to investigate the possibility of having Usher Syndrome.

The doctor in Amsterdam diagnosed me with Usher Syndrome. It was a slap in the face. I was already in a long-term relationship with my wife and the doctor told me that it would be best to have children asap. This way I could still see them growing up, as I would go blind later in my life. I thought that it was a very strange remark!

My children are 22 and 16 years old at the moment and I still can see them despite my very small tunnel vision of about 10 degrees.

After that visit to the hospital I never drove a car again.

It felt quite bad that I could not drive my car anymore, it felt like my freedom and my independence were taken away.

The years after that I totally ignored my visual impairment, this way it did not feel so bad!

I had a nice career in the local council as a financial consultant. Yes I did use a cane and magnification software on my computer, but I did my best to remain part of the "normal" hearing and seeing world.

Until two years ago, where I realised that I could not take it anymore! I had burn-out and I decided together with The Royal Dutch Visio, an organization specialised in people with visual impairments, to follow a rehabilitation program. During this intensive program, I came to terms with both my visual and hearing impairments. I learnt how to pay attention to the signals that my body sent when I was getting tired. This was something that I had neglected for many years! Listening to my own body, setting my own limits are and not just do what everyone expects from me.

After my revalidation, I went back to my job on a part-time basis and I am now busy creating a new job. I want to focus on sports for disabled people. I believe that I have a lot to offer using my own experience as deafblind runner and board member of the Running Blind Foundation in The Netherlands. Always look for opportunities and follow your passion instead of remaining in the shadow.

November 2011 was also a turnaround point for me. The Usher Syndrome symposium in the Netherlands! Since then I have accepted my Usher Syndrome even more and I want to get in touch with more peers with Usher Syndrome. During that symposium, I experienced how much I can learn from my fellow sufferers.

 I am also an advocate to bring Ushers in Europe and beyond in contact with each other. Creating more #usherawareness is very important.

At the moment, I am busy with some other fine Ushers setting this up! Keep an eye on www.ushersyndroom.nl!!!  We will soon go live and next to our Dutch website, you will also be able to find all important information translated in English. I also hope to meet Molly in person one day during an International Usher Day or Usher conference in The Netherlands or in England or in Ireland [Symbol].

De vrolijke groet van Rick

 

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