How being diagnosed with a fatal disease changed my life
During this week of awareness month, we are focusing on dealing with loss or change in relation to Huntington’s disease. Finding out that you have the Huntington’s gene can be difficult news to hear and coming to terms with the changes this may bring in your life can be confusing and upsetting.
In this interview, we talk to Emma Fletcher. Emma is the Head of Girls Football Development at Manchester United, a mother, wife, friend, fundraiser, #HDAwarenessMonth supporter and she has Huntington’s disease. Emma is going to discuss how being diagnosed with a fatal disease has changed her life.
Tell us a little about your background and where you're from?
My name is Emma, I am a mum to a seven year-old daughter and I am from Oldham. I have been married to my partner, Billy, for ten years, have worked at Manchester United for 19 years, I started as a football coach and now am the Head of Girls Football Development, and I have Huntington’s disease.
How did you feel after testing positive for the Huntington’s gene?
Terrified and sad. I was 21 years old and was devastated as you would imagine. I can’t remember how long that lasted for but that kind of fear doesn’t go away overnight. At that point in time, I had decided that I only wanted to share my test results with a few trusted friends and close family. That’s how it stayed for nearly 15 years until I knew things were starting to change and the grip of Huntington’s was firmly upon me.
How did you come to terms with your positive test result?
It’s not been easy. But this aside, I have a great life. I think I came to terms with the result because I decided, at some point during those early days, after my positive test result, that I wouldn’t be ignorant to what this meant for my future or be in denial, but to have as much fun and cram in as much as possible whilst I was healthy enough. It took time and lots of difficult conversations, especially with one of my uncles, he was caring for my auntie who had Huntington’s. Seeing how they used humour as a coping mechanism rubbed off on me massively. My auntie never complained once and I get that we only saw small snippets of what that household went through on a day-to-day basis, but that was my inspiration to hit this head-on and get on with what’s left of my life, before everything as we know it, changes forever.
Did your life change once you found out you had the gene?
Absolutely. I was devastated but wanted to try and help in the quest for a cure. I soon signed up and got enrolled in different research, which is pretty gruelling, but it gives me a smidge of hope that one day people will not have to go through what me and my family are going through – maybe even bring to a halt the onset. I still hope to get on a trial in the future.
It also had an impact on my relationships. Do I have children or do I not have children? My husband and I had five or six years of should we or should we not. It was heartbreaking at times, not sure what could prepare you better for that.
What is daily life like for you now?
Life is tough at times but I have a seven year-old daughter, who I know will not want to see her mum upset or getting mad. I have my game face on for her and for work sometimes I guess, but most people know about my diagnosis now and I am very lucky to have a strong support network around me. My husband does his best to make things as easy for me at home as possible, we don’t always agree, but I now realise at times to just go with it. This isn’t easy for any of us and we are just winging it most of the time.
At the minute I am still working full-time and my employers have been great in the way that they have supported me and made sure that any adjustments, recommended or requested to help me work at my maximum are made where possible. The Huntington’s Disease Association always provide support on this and have recently held a Huntington’s information session at Old Trafford for our department and HR.
Although there is no such thing as a simple task any more, I try to take time to work through things at my own pace, with as little distraction as possible. Things are getting harder and I realise that. I will be dropping to part-time work in the near future, but I love what I do and despite some big challenges over the past year or two, having this focus helps to keep me going.
Do you have any advice for others who may be in a similar situation to you?
It's ok everyone saying ‘stay positive and that will make this an easier ride’. In my opinion, that’s not always possible for everyone, because everyone has different circumstances. Try to get your head around accepting help, advice and support, even when normally you wouldn’t need this. When this disease is in its early onset, you may want to ignore certain symptoms or signs for a while but those closest to you will have spotted them all a mile off anyway. It is best to acknowledge that the changes are happening and deal with it or it can take you to a bad place mentally.
Try your best to do some kind of exercise. I have got back into running over the last year and it definitely has a positive impact on my mood and energy levels.
Although it’s hard to set longer-term goals which aren’t just practical things. Try and make some achievable targets and enjoy smashing them even though to others they may seem really small.
Celebrate as much as possible if you are feeling up to it.
A massive thank you to Emma for opening up and giving her honest and open opinions and experiences on testing positive for Huntington’s disease. We hope this interview can shed some light for those who have just tested positive themselves and help raise awareness for those who know little of the disease.
If you are affected by Huntington’s and need support or advice, please contact us on 0151 331 5444 or email info@hda.org.uk.
COVID-19 has had a dramatic effect on our way of life. This will significantly impact our fundraising efforts and ability to help and care for those affected by Huntington’s disease. If you would like to donate to help us support those affected by Huntington's during this time, please click here. #HDAppealCV19
During this week of awareness month, we are focusing on dealing with loss or change in relation to Huntington’s disease. Finding out that you have the Huntington’s gene can be difficult news to hear and coming to terms with the changes this may bring in your life can be confusing and upsetting.
In this interview, we talk to Emma Fletcher. Emma is the Head of Girls Football Development at Manchester United, a mother, wife, friend, fundraiser, #HDAwarenessMonth supporter and she has Huntington’s disease. Emma is going to discuss how being diagnosed with a fatal disease has changed her life.
Tell us a little about your background and where you're from?
My name is Emma, I am a mum to a seven year-old daughter and I am from Oldham. I have been married to my partner, Billy, for ten years, have worked at Manchester United for 19 years, I started as a football coach and now am the Head of Girls Football Development, and I have Huntington’s disease.
How did you feel after testing positive for the Huntington’s gene?
Terrified and sad. I was 21 years old and was devastated as you would imagine. I can’t remember how long that lasted for but that kind of fear doesn’t go away overnight. At that point in time, I had decided that I only wanted to share my test results with a few trusted friends and close family. That’s how it stayed for nearly 15 years until I knew things were starting to change and the grip of Huntington’s was firmly upon me.
How did you come to terms with your positive test result?
It’s not been easy. But this aside, I have a great life. I think I came to terms with the result because I decided, at some point during those early days, after my positive test result, that I wouldn’t be ignorant to what this meant for my future or be in denial, but to have as much fun and cram in as much as possible whilst I was healthy enough. It took time and lots of difficult conversations, especially with one of my uncles, he was caring for my auntie who had Huntington’s. Seeing how they used humour as a coping mechanism rubbed off on me massively. My auntie never complained once and I get that we only saw small snippets of what that household went through on a day-to-day basis, but that was my inspiration to hit this head-on and get on with what’s left of my life, before everything as we know it, changes forever.
Did your life change once you found out you had the gene?
Absolutely. I was devastated but wanted to try and help in the quest for a cure. I soon signed up and got enrolled in different research, which is pretty gruelling, but it gives me a smidge of hope that one day people will not have to go through what me and my family are going through – maybe even bring to a halt the onset. I still hope to get on a trial in the future.
It also had an impact on my relationships. Do I have children or do I not have children? My husband and I had five or six years of should we or should we not. It was heartbreaking at times, not sure what could prepare you better for that.
What is daily life like for you now?
Life is tough at times but I have a seven year-old daughter, who I know will not want to see her mum upset or getting mad. I have my game face on for her and for work sometimes I guess, but most people know about my diagnosis now and I am very lucky to have a strong support network around me. My husband does his best to make things as easy for me at home as possible, we don’t always agree, but I now realise at times to just go with it. This isn’t easy for any of us and we are just winging it most of the time.
At the minute I am still working full-time and my employers have been great in the way that they have supported me and made sure that any adjustments, recommended or requested to help me work at my maximum are made where possible. The Huntington’s Disease Association always provide support on this and have recently held a Huntington’s information session at Old Trafford for our department and HR.
Although there is no such thing as a simple task any more, I try to take time to work through things at my own pace, with as little distraction as possible. Things are getting harder and I realise that. I will be dropping to part-time work in the near future, but I love what I do and despite some big challenges over the past year or two, having this focus helps to keep me going.
Do you have any advice for others who may be in a similar situation to you?
It's ok everyone saying ‘stay positive and that will make this an easier ride’. In my opinion, that’s not always possible for everyone, because everyone has different circumstances. Try to get your head around accepting help, advice and support, even when normally you wouldn’t need this. When this disease is in its early onset, you may want to ignore certain symptoms or signs for a while but those closest to you will have spotted them all a mile off anyway. It is best to acknowledge that the changes are happening and deal with it or it can take you to a bad place mentally.
Try your best to do some kind of exercise. I have got back into running over the last year and it definitely has a positive impact on my mood and energy levels.
Although it’s hard to set longer-term goals which aren’t just practical things. Try and make some achievable targets and enjoy smashing them even though to others they may seem really small.
Celebrate as much as possible if you are feeling up to it.
A massive thank you to Emma for opening up and giving her honest and open opinions and experiences on testing positive for Huntington’s disease. We hope this interview can shed some light for those who have just tested positive themselves and help raise awareness for those who know little of the disease.
If you are affected by Huntington’s and need support or advice, please contact us on 0151 331 5444 or email info@hda.org.uk.
COVID-19 has had a dramatic effect on our way of life. This will significantly impact our fundraising efforts and ability to help and care for those affected by Huntington’s disease. If you would like to donate to help us support those affected by Huntington's during this time, please click here. #HDAppealCV19