Meet the stars of this year's BBC Lifeline appeal.
Chris is a proud advocate of the Huntington’s Disease Association. He lost his mum in 2015 and the gene was passed down to him. Chris became symptomatic around five years ago. It was the mental health symptoms that arose first leading to the need for medication.
I felt scared that people would notice my emerging tremor or fading memory. I now struggle with my hand-eye coordination and more than anything else, I feel a sense of profound loss as I am no longer myself.
Despite dealing with the implications of his progressive symptoms, Chris has thrown himself into raising awareness and helping with clinical research to help develop new treatments for Huntington's. He is currently two years into HD Clarity, and international research study that requires participants to get a yearly lumbar puncture to get biomarkers on Huntington's disease that will help develop new treatments.
Support groups
Chris has been supported by the Huntington’s Disease Association for a number of years. He attends regular support groups run by the Huntington's Disease Association. These groups are a great way for individuals to spend time with people going through a similar thing to them.
He has a close relationship with his Specialist Adviser, Rachel. Rachel encouraged Chris to join a 'Living Well' programme at Isabel Hospice after noticing that he was no longer wanting to go out and isolating himself. The wellbeing programme helps people adjust to the changes that come with living with a life-limiting or terminal condition.
The exercise group has physically given me confidence in my balance and it’s improved my core strength. It starts here but it goes on outside the doors. It might sound simple to someone else but even the fact I can now play pool, stand up and bend to hit the ball. The things I have learned from the classes and treatments have impacted me in a really positive way. The therapy has been amazing and have all brought my stress down and reduced my anxiety.
Support in employment
When Chris noticed that he was becoming symptomatic, he contacted the charity and meetings were arranged between Chris’ employers and the charity’s Specialist Advisers. This helped his employer to understand the disease and its symptoms better and they were advised how they could best support Chris to keep him in work for as long as possible.
I know that Helen [Huntington’s Disease Association] always acted with my best interest at heart and her advocacy gave me a voice. She was impartial with work and the realities of how to cope/understand the ups and downs of having me as a member of staff. The whole process was very open and my adviser's support went beyond what I thought. She was spoken so highly of by my employer - both on a personal and professional level. I owe her a debt of thanks that I don’t think I’ll be able to repay.
Huntington's disease ambassador
Chris is now a very active ambassador and does whatever he can to raise awareness of Huntington’s disease. From working with the charity writing and blogs for the website to speaking with the press openly about what it’s like to live with the disease. Recently, Chris shared his Huntington's story in a National publication after a request to our ambassadors.
He has been a guest speaker at the Huntington's Disease Association professional course which included a Q&A from a range of healthcare delegates. I have been encouraged by a few member of the charity as he was looking for ways to raise awareness and share his lived experience of the disease.
My work focus was care and support in the community and since I am no longer able to work, I have had a gap in channelling my energy.
BBC Lifeline Appeal
The BBC Lifeline appeal will air on Sunday 28 April at 12.50pm.
