Positivity is key: An interview about Huntington’s disease genetic testing
If one of your parents is affected by Huntington’s disease there may be many questions circulating in your mind. One of the most pressing being, ‘do I want to be tested for the Huntington gene?’ This is an extremely hard question to answer and one that should not be made lightly. In the UK, you must be 18 years or older to begin the testing process and this begins with several months of counselling to prepare you for your result. In this interview, we hear from Josh as he talks us through how his life is affected by Huntington’s and what it was like to go through Huntington’s disease genetic testing.
Who is Josh?
My name is Josh, I am from Bridlington, East Yorkshire and have always lived there. I am 21 years old and have four brothers and two sisters, I am the youngest.
What's your connection to Huntington’s disease?
“I think it was after my Mum actually passed, it was then that I began to fully comprehend Huntington’s and what it was.”
In my family, my mother’s side is where the Huntington’s disease originates, her father had Huntington’s and passed it down. My mother passed away in her 40’s from Huntington’s and for most of my childhood, I only remember her being quite symptomatic with Huntington’s. I was ten years old when she passed away. It was difficult because as I child I was never really fully aware of why my Mother wasn’t very well, as Huntington’s is a big thing for children to comprehend. I think it was after my Mum actually passed, it was then that I began to fully comprehend Huntington’s and what it was. I always felt as though I couldn’t speak about what I was feeling after my Mum passed away because I didn’t want to bring up an emotional subject with family members and because I didn’t know of anyone else with Huntington’s I didn’t think my friends would understand. As I got older it became easier and I had great support from my siblings and close friends.
Why did you decide to get tested?
“It was always something that would play on my mind, the not knowing was dreadful”
I decided to get tested after both my brother and sister got positive tests back for Huntington’s. It was always something that would play on my mind, the not knowing was dreadful. As soon as I turned 18 I went and spoke to my GP and he referred me to the genetic counsellor to get tested for Huntington’s.
What was the testing process like for you?
“The support I had helped massively with my down days, I think if I didn’t have this, I could’ve quite easily have got myself very depressed …”
The process was long, about six months from start to finish, it felt a lot longer. The counsellors were lovely and very helpful at Castle Hill Hospital and I had the amazing support from my boyfriend (now my fiancé). The support I had helped massively with my down days, I think if I didn’t have this, I could’ve quite easily have got very depressed and other problems could’ve occurred from this.
How did you feel after getting your result?
“I felt strange and it’s hard to explain, I just felt numb. I think I was expected to break down into tears but I didn’t.”
The day I actually went to pick up my results was awful. I was waiting around for three hours in the Hospital. I was initially upset at this but I was told there had been lots of bad results to give out to people that day and the aftercare had resulted in being very behind schedule. I remember as soon I walked into the room my counsellor just told me to take my time. At that point, I knew deep down it wasn’t good news. I could tell by the small talk and lead up to the result. “I’m really sorry Josh, but it’s not good news”. I felt strange and it’s hard to explain, I just felt numb. I think I was expected to break down into tears but I didn’t. I thought I was lacking in emotion but really, I was just bottling everything up and later on that day when I got loads of text messages and phone calls off of friends and family asking if I was ok, it then started to sink in. Especially when I spoke to my auntie over the phone and I could hear a disguised cry in her voice.
How did you come to terms with your result?
“I decided that I would make the most of the rest of my life and had a totally fresh perspective on life, I was going to live life to the fullest.”
I came to terms with my result over the coming months as I decided I wasn’t going to mope around and dwell on what is to come. I knew that would never be the case as I am a positive person. I decided that I would make the most of the rest of my life and had a totally fresh perspective on life, I was going to live life to the fullest. I was and still am, at my fittest and am at a prime age for making memories. I also decided I would make a pact to do my bit to raise money and awareness for the Huntington’s Disease Association as the support they give is amazing. In 2016, I took part in a three-day trek of the Swiss Alps, covering Switzerland, France and Italy across 40 miles of trekking. It was an incredible and life-changing experience. I made lifelong friends who regularly make the effort to meet up with me even though they live a six-hour journey away in London. I raised over £3000 for this challenge. I have taken part in other charity challenges and am currently raising money for a trek of the Grand Canyon that me and my fiancé are taking part in this September.
Do you have any advice for people considering genetic testing?
“…whatever the test result, take it as either a blessing and make the most of your life, or take it as an excuse to make the most of your life…”
The only advice I could give to people is to turn a negative situation into a positive one. Either way, whatever the test result, take it as either a blessing and make the most of your life, or take it as an excuse to make the most of your life as you don’t know when the Huntington’s will kick in.
We hope that Josh’s inspirational and honest story has given an insight into the testing process. But remember, testing is not right for everyone and every person is different. In the end, you are the one who must make the decision to be tested.
If you are affected by Huntington’s disease and would like advice on genetic testing please get in touch with us on info@hda.org.uk or call 0151 331 5444. You can also learn more about the Huntington’s disease genetic testing process by reading our helpful factsheet.
If this article has inspired you to fundraise for the Huntington’s Disease Association and take on some life-changing challenges just like Josh, please email fundraising@hda.org.uk or take a look at our fundraising page for more information.
If one of your parents is affected by Huntington’s disease there may be many questions circulating in your mind. One of the most pressing being, ‘do I want to be tested for the Huntington gene?’ This is an extremely hard question to answer and one that should not be made lightly. In the UK, you must be 18 years or older to begin the testing process and this begins with several months of counselling to prepare you for your result. In this interview, we hear from Josh as he talks us through how his life is affected by Huntington’s and what it was like to go through Huntington’s disease genetic testing.
Who is Josh?
My name is Josh, I am from Bridlington, East Yorkshire and have always lived there. I am 21 years old and have four brothers and two sisters, I am the youngest.
What's your connection to Huntington’s disease?
“I think it was after my Mum actually passed, it was then that I began to fully comprehend Huntington’s and what it was.”
In my family, my mother’s side is where the Huntington’s disease originates, her father had Huntington’s and passed it down. My mother passed away in her 40’s from Huntington’s and for most of my childhood, I only remember her being quite symptomatic with Huntington’s. I was ten years old when she passed away. It was difficult because as I child I was never really fully aware of why my Mother wasn’t very well, as Huntington’s is a big thing for children to comprehend. I think it was after my Mum actually passed, it was then that I began to fully comprehend Huntington’s and what it was. I always felt as though I couldn’t speak about what I was feeling after my Mum passed away because I didn’t want to bring up an emotional subject with family members and because I didn’t know of anyone else with Huntington’s I didn’t think my friends would understand. As I got older it became easier and I had great support from my siblings and close friends.
Why did you decide to get tested?
“It was always something that would play on my mind, the not knowing was dreadful”
I decided to get tested after both my brother and sister got positive tests back for Huntington’s. It was always something that would play on my mind, the not knowing was dreadful. As soon as I turned 18 I went and spoke to my GP and he referred me to the genetic counsellor to get tested for Huntington’s.
What was the testing process like for you?
“The support I had helped massively with my down days, I think if I didn’t have this, I could’ve quite easily have got myself very depressed …”
The process was long, about six months from start to finish, it felt a lot longer. The counsellors were lovely and very helpful at Castle Hill Hospital and I had the amazing support from my boyfriend (now my fiancé). The support I had helped massively with my down days, I think if I didn’t have this, I could’ve quite easily have got very depressed and other problems could’ve occurred from this.
How did you feel after getting your result?
“I felt strange and it’s hard to explain, I just felt numb. I think I was expected to break down into tears but I didn’t.”
The day I actually went to pick up my results was awful. I was waiting around for three hours in the Hospital. I was initially upset at this but I was told there had been lots of bad results to give out to people that day and the aftercare had resulted in being very behind schedule. I remember as soon I walked into the room my counsellor just told me to take my time. At that point, I knew deep down it wasn’t good news. I could tell by the small talk and lead up to the result. “I’m really sorry Josh, but it’s not good news”. I felt strange and it’s hard to explain, I just felt numb. I think I was expected to break down into tears but I didn’t. I thought I was lacking in emotion but really, I was just bottling everything up and later on that day when I got loads of text messages and phone calls off of friends and family asking if I was ok, it then started to sink in. Especially when I spoke to my auntie over the phone and I could hear a disguised cry in her voice.
How did you come to terms with your result?
“I decided that I would make the most of the rest of my life and had a totally fresh perspective on life, I was going to live life to the fullest.”
I came to terms with my result over the coming months as I decided I wasn’t going to mope around and dwell on what is to come. I knew that would never be the case as I am a positive person. I decided that I would make the most of the rest of my life and had a totally fresh perspective on life, I was going to live life to the fullest. I was and still am, at my fittest and am at a prime age for making memories. I also decided I would make a pact to do my bit to raise money and awareness for the Huntington’s Disease Association as the support they give is amazing. In 2016, I took part in a three-day trek of the Swiss Alps, covering Switzerland, France and Italy across 40 miles of trekking. It was an incredible and life-changing experience. I made lifelong friends who regularly make the effort to meet up with me even though they live a six-hour journey away in London. I raised over £3000 for this challenge. I have taken part in other charity challenges and am currently raising money for a trek of the Grand Canyon that me and my fiancé are taking part in this September.
Do you have any advice for people considering genetic testing?
“…whatever the test result, take it as either a blessing and make the most of your life, or take it as an excuse to make the most of your life…”
The only advice I could give to people is to turn a negative situation into a positive one. Either way, whatever the test result, take it as either a blessing and make the most of your life, or take it as an excuse to make the most of your life as you don’t know when the Huntington’s will kick in.
We hope that Josh’s inspirational and honest story has given an insight into the testing process. But remember, testing is not right for everyone and every person is different. In the end, you are the one who must make the decision to be tested.
If you are affected by Huntington’s disease and would like advice on genetic testing please get in touch with us on info@hda.org.uk or call 0151 331 5444. You can also learn more about the Huntington’s disease genetic testing process by reading our helpful factsheet.
If this article has inspired you to fundraise for the Huntington’s Disease Association and take on some life-changing challenges just like Josh, please email fundraising@hda.org.uk or take a look at our fundraising page for more information.