My experience as a Helpline Advisor with Usher Syndrome

“Living with deafblindness from Usher Syndrome and as a mum too, it’s good to share all my experience over the years. Wearing hearing aids for 48 years and learning with my eyes has given me a good understanding to have a voice, build confidence, know what support is out there to help everyone who calls our helpline and give them hope.”  – Angela, Helpline Advisor.

Recently, we spoke to our Helpline Advisor Angela Priestley, who has Usher Syndrome Type 2, about her experiences of supporting other deafblind people to live with their condition.

What is your role at Deafblind UK, and what does a typical day look like for you? 

One of my roles is as a helpline advisor at Deafblind UK. I also work on the National Usher Helpline. I have been at Deafblind UK almost four years, doing phone calls to provide advice, help, and guidance. I help people to understand deafblindness and what support is out there. Just listening to them offload, I can hear the relief in their voices that somebody understands. 

How does our helpline support people affected by deafblindness? 

Making that phone call for the first time is such a powerful moment as they’ve reached out for help. Our job is to help them reach a safe place. We listen to them, find out what support they need, where they have they been let down, and how we can fill the gaps and offer some hope.  

When people are diagnosed with deafblindness, they are often not told how to move forwards and get to know their condition. This is where we step in, building people’s confidence and helping them learn how to cope with deafblindness and making sure they get the right support, such as deafblind assessments, equipment in their home, and the right technology.  

People know they can ring our helpline as many times as they want – they aren’t alone anymore – and their family and support network can call too to learn about their condition. 

Can you tell us about a memorable experience of working on the helpline? 

I will never forget a young lady who rang in after just being diagnosed with a condition called Usher Syndrome, the same condition as me. She didn’t want to be a burden to mum and dad, she thought there was no life anymore, until she spoke to me. There was such a relief in her voice having met somebody with Usher syndrome, and she did not feel alone anymore.  

She thought she was the only person who had this condition. I explained what Usher Syndrome was and how to have a life with it, sharing my experience and the support out there. It touched my heart, as I know how it feels to be so alone for the first time. It is so special to have Deafblind UK here to support the first call someone makes after being diagnosed. 

How does your personal experience of deafblindness shape your work? 

Living with deafblindness from Usher Syndrome and as a mum too, it’s good to share all my experience over the years. Wearing hearing aids for 48 years and learning with my eyes has given me a good understanding to have a voice, build confidence, know what support is out there to help everyone who calls our helpline and give them hope. 

Being born with Usher Syndrome Type 2, I’ve grown up finding my own way to cope. I have learnt to adapt my communication, and how to replace the loneliness of missing out on a lot of things. No one tells you how to do this but yourself. So, it’s all learning about your eyes, adapting to how your deafblindness changes in different environments, how you miss out on conversations walking away embarrassed.  

I also encourage the public to understand what deafblindness is, as we are all different. Giving guidance, support, understanding to each person who calls us helps me too. I don’t want anyone to feel alone, sharing my experience is very special to me. 

Every 12 minutes, we answer a request for life-changing support through the Deafblind UK helpline. Donate today to help us answer the next urgent call and, together, we can ensure that no one has to face deafblindness alone.