UWTSD graduate impacted by Huntington’s Disease uses her research to raise awareness
The impact of Huntington’s disease (HD) for Carly Evans and her family is immense. It is a condition that damages nerve cells in the brain causing them to stop working properly. It’s passed on (inherited) from a person’s parents. It can affect movement, cognition (perception, awareness, thinking, judgement) and mental health.
Carly, 29, has a passion for supporting the HD community. She wants to use her personal experience of HD to raise awareness of the condition and the impact it has on families.
Today, Carly graduates with a first-class honours degree in Psychology and Counselling which has seen her undertake research which focused on the challenges a young person faces navigating a life impacted by HD as part of her dissertation.
She is also an ambassador for the Huntington’s Disease Youth Organisation (HDYO) and the Huntington’s Disease Association (HDA) helping to support the HD community and educate society.
Last month, Carly presented her research entitled: ‘An interpretive phenomenological analysis exploring the experience of being ambassador for the Huntington’s disease youth organisation’ at the annual Welsh Branch of the British Psychological Society conference. This enabled her to provide valuable insight into the effects on young people impacted by HD which are often overlooked.
Carly said: it’s so important to me that I use my incredibly difficult experience following my own impact of HD to do something positive and be there for others who are going through similar experiences.
“I want to shine a light on the mental health challenges individuals impacted by HD face and the immense shortfall in mental health services following the genetic testing process of the disease.
“There is also a limited knowledge surrounding HD amongst so many mental health practitioners which increases the difficulties in obtaining support.”
Carly also has an additional rare genetic condition leber hereditary optic neuropathy (LHON) which means she is vision impaired. Despite her health setbacks has remained determined to persevere, to prove she is ‘more than a genetic condition.’ She wants to use her experiences in a positive light to support others.
Carly, who lives in Swansea, went through the HD genetic testing process, and received her positive diagnosis during Covid. At a time where many of us already felt vulnerable and alone during lockdown, she also had to come to terms with the life changing information.
During the pandemic, Carly also enrolled at UWTSD to study counselling and psychology, a decision she says now puts her in a position to support others impacted by HD. She said she wasn’t academic during school and struggled and with the added barriers was unsure if she could complete her course. But she chose to persevere and prove to herself and others it was possible.
She now wants to use the skills she has learnt in higher education over the last three years to help others and to highlight the lack of counselling support for individuals impacted by HD.
Carly said: “The condition has a devastating impact, for me it’s meant resilience to be able to move forward in life but of course there are days that can be particularly challenging, which is why I have chosen to highlight the difficulties that come as a direct result of a life impacted by HD. I am fortunate that I have a strong family around me who continually support me and want the best for me as well as my partner, friends, and lecturing staff at UWTSD.
“Being impacted by HD can be a very lonely place to be and I want that to change. I am hopeful that my studies, research, and continual advocacy can change that, and I can make a difference in helping others going through similar circumstances.”
For her dissertation, Carly interviewed other young people impacted by HD to explore the challenges they face being in a family impacted by HD. Carly hopes to present her findings to relevant health bodies in a bid to establish more psychological support. Carly was awarded the BPS Wales prize for the best psychology dissertation in recognition of the quality and potential impact of this research.
She is also planning to continue her studies at UWTSD, studying for a master’s in Psychotherapeutic Practice, taking her one step closer to her future career aspiration in that specialist field.
Carly said: “I truly believe I have an important part to play to ensure no other young person or individual impacted by HD ever feels vulnerable, isolated or alone and has the support they truly deserve.”
In March this year, Carly was invited to be part of an ‘ask the experts’ panel at HDYO’s International Congress in Glasgow, where she was able to provide valuable insight into her lived experience and the impact HD has on youngsters all over the word and how support is so crucial.
Ceri Phelps, Principal Lecturer in Health Psychology at UWTSD said: “Carly is an exceptional young lady whose passion and commitment to raising awareness of the psychological impact of HD is so inspiring. It has been a pleasure to supervise Carly’s dissertation research over the last year and I am looking forward to continuing to work with her to maximise the impact of this research.”
Note to Editor
Carly is an ambassador for Huntington’s Disease Youth organisation (HDYO) – a group of young people from across the globe. They are leaders and advocates in the HD community. The aim of the group is to volunteer, raise awareness of HD and fundraise.
The group launched in April 2021 and meet each month. They are truly global coming from Canada, South America, US, Europe, Australia, and The Middle East.
They share their experiences and aim to connect the HD community to show they are not alone. They are focusing on a number of campaigns throughout the year including sharing Top Tips to help others, outlining their own journeys, developing fundraising campaigns, to keeping their fingers on the pulse of the latest in HD.
Further Information
Rebecca Davies
Executive Press and Media Relations Officer
Corporate Communications and PR
Email: rebecca.davies@uwtsd.ac.uk
Phone: 07384 467071