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My name is Helen Colson. I’m 29 years old & live in Southport, Merseyside. I was diagnosed with Retinitis Pigmentosa and as I am moderate-severely deaf, Ushers Syndrome last year. 

It wasn’t easy getting my diagnosis after Specsavers were concerned about my visual field test results and referred me (via my then GP) to Heartlands Hospital in Birmingham as that’s where I was based at the time. 

After dilating my eyes and other tests, they initially wanted to write it off as jelly breaking off at the back of my eyes which is apparently common for someone in their late 20s but they were concerned about scarring on the back of my eyes and was told I’d be seen again December 2017. 

In November 2017 I went to do my visual fields testing again but didn’t see a consultant until July 2018. I weirdly don’t remember this appointment at all. Other upon informing them I was just about to move to Southport; I was asked to stay until my diagnosis was sorted. Two months later I had another visual fields test and the nurse was concerned as it was getting worse, so managed to get me to see a trainee. We had a chat and it was suggested I needed to go to two other hospitals in Birmingham for further testing as they couldn’t do an MRI scan. 

In October I went to the Midland Eye Clinic for electrodiaganostic testing which I got very anxious about as by now I was getting desperate for answers. I returned in November to see a different consultant who didn’t know why I was there and would later on send my diagnosis via letter. 

I felt like my world fell apart after reading that letter and jumping straight onto Google. I’d only ever heard of Ushers when Molly appeared on SeeHear about a decade before. 

I did eventually see my consultant again January 2019 & my care wasn’t transferred. But I am seeing Professor Black in Manchester next month. 

It’s been a very scary six months post diagnosis especially as I was left with no information or support initially and due to my pre-existing ambolyia in my left eye I didn’t want to go blind. I also had a massive breakdown but now I’m learning to rebuild my new life. I have a symbol cane & am learning to use my long cane. I am going through the process with Guide Dogs to get one. I’ve luckily found someone here who also has it herself. So we both really support one another. 

I’m also currently running my own page (Living with Ushers Syndrome) & am making a documentary about the condition as so many have no idea. 

I don’t know what the future holds but I’m trying to tackle it head on & won’t let it stop me from continuing to add to my many achievements.  

 

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