THE USHFAMILY BLOG



Welcome to the USHFamily Blog.

In the Usher community many have nicknamed this ever growing community as the ‘USHFamily’ due to the strength of this community as we face the challenges of Usher together. These blog posts are on various different topics, and are written by members of the USHFamily. From some inspiring stories to the all-too-familiar diagnosis stories, we are sure that many of you will relate to these individual stories, as well as feeling encouraged and motivated. We also believe that by sharing our stories that it can help others to feel less alone on their Usher journey.

We would welcome, and love, any new blog posts on any topic as long as it’s Usher related in some way! Send us one today to contact@cureusher.org with ‘Blog’ in the subject line.

Daniel, from ProQR who are trialling Usher syndrome research, is sitting at a white desk.


Patients First

By: Daniel de Boer First and foremost, CUREUsher has created a welcoming community for everyone affected by Usher syndrome – patients, loved ones, caregivers, and the medical community. It means a lot to me that I am able to share my story here. As the father of a son with a cystic fibrosis, I am… Read more »



Image is of snow-capped peaks with the sky red behind them as the sun is setting.


Changes (part 4)

Final in a series of blog post written by Lynne Morris…  I have been back to the hospital many times since diagnosis. In 2010, I had to have cataract surgery for both eyes.  Not at the same time obviously! I was the youngest patient, when I went for the first eye.  I was so nervous… Read more »



A headshot of Lynne, looking at the camera and smiling. She is wearing glasses and has short dark brown hair.


Changes (part three)

Part three in a series of blog post written by Lynne Morris… I couldn’t really talk to my brother who was diagnosed alongside me. We both reacted differently.  We were both at different stages in our lives.  He was still living at home, therefore, didn’t have the same responsibilities that I had to take care… Read more »



Lynne is kneeling next to a guide dog, wearing a red and white harness.


Changes (part two)

Part two in a series of blog post written by Lynne Morris… I could have had one last blast in the car and driven home from my nan’s where I’d left it parked.  However, after a very long and serious discussion with my parents, it was decided it wasn’t worth the risk.  What if I… Read more »



A woman and a man are next to each other. The woman is Lynne, and she has short brown hair, and iis holding a cane in her hand.


Changes (part one)

This is part one in  a series of blog posts written by Lynne Morris… Changes It was a routine eye test at Specsavers that started it all, with a rather dishy older man.  I giggled like a little girl in my head every time he looked into my eyes.  It’s a very up close and… Read more »






Conquering the mountain. (part four)

Final post of four in a series of  blog posts written by Deborah King of how she conquered Mt Kilimanjaro this year despite the challenges she faced along the way due to Usher syndrome. I knew I should have begged Gavin to let me pay for a helicopter down, he didn’t seem to think it… Read more »






Conquering the Mountain. (part three)

Part three of four in a series of  blog posts written by Deborah King of how she conquered Mt Kilimanjaro this year despite the challenges she faced along the way due to Usher syndrome. Night 4 – After two hours of shivering in our sleeping bags and getting very little sleep, we were up at… Read more »



Two people are sitting and Deborah is standing in the middle, smiling at the camera. Extreme fog is in the background.


Conquering the Mountain. (part two)

Part two of four in a series of blog posts written by Deborah King of how she conquered Mt Kilimanjaro this year despite the challenges she faced along the way due to Usher syndrome. Day 3 – It was a little chilly this morning but a t-shirt and jumper was fine to keep us warm enough.… Read more »



A man and two women huddled in a tent having a meal


Conquering the mountain. (Part one)

Part one of four in a series of blog posts written by Deborah King of how she conquered Mt Kilimanjaro this year despite the challenges she faced along the way due to Usher syndrome. Honeymoons are meant to be relaxing, right? Well I don’t think my husband likes to relax, in fact I don’t even… Read more »



A blindfolded man being led by a black dog accompanied by another man. Both are wearing hiking gear.


The Lone Walker-Blog

My name is Andy, otherwise known as The Lone Walker. Two years ago, I decided to do something pretty big. I had started a recovery from severe depression lasting 4 years, and spending time in the hills and mountains helped me greatly. In the October of that year, I walked up Ben Nevis in Scotland… Read more »



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