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‘Getting the foundations right is a platform for growth’

Darran, who lives with Huntington’s disease, shares his story of diagnosis, finding support and looking to the future

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My name is Darran and I am 54 years old. I am a qualified builder and electrical engineer by background. I was diagnosed with Huntington’s disease in 2016.

Receiving a diagnosis came as a shock and raised a number of questions for me, including what this meant for my life, my aspirations and relationships. These answers were not forthcoming, which raised my anxieties. 

I was in search of answers, and without signposting, did not know what to do or where to go. 

I became quite hot headed and did not recognise where my behaviour was coming from, but there was an illness I could feel in me. 

It was difficult to me to own these changes that myself and others were noticing. I started to isolate myself and push others away to shield them, and I was losing friendships because of it. 

It was important for me to work out my past, plan for my future, and to find the right solution for me. I wanted to be living my life to its fullest and to do the best I could do each and every day. 

Over the years, I have found it difficult to trust and put my faith in professionals. I felt misunderstood, and did not think I was getting the right support. I expected more from the system. 

I could not fix myself, and felt I was crawling through the mud. 

It was only when I came to St Andrew’s that things started to change for me. I began to open up a bit more. I was in good hands and that gave me a bit more hope. 

It was a new start to something better. I realised that, in an unexpected turn of events, I had needed to be here all along. 

Getting the foundations right is so important as a platform for growth. 

The staff provide predictability and flexible structure. They have got to know me for who I am, which has improved my quality of life. I don’t have to think twice here. They understand Huntington’s disease and my needs, and help adapt to changes with me.

I can now think more clearly and have belief in myself and my future.  

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