May is Huntington Awareness Month, a time dedicated to spreading knowledge, offering support, and fostering hope for those affected by this challenging condition.
At Concept Care, we believe in the power of sharing real-life stories to raise awareness and foster a supportive community. This month, we are honoured to share the journey of one of our clients, Joseph. His resilience and strength in living with Huntington’s Disease inspire us all.
- Watch the video here
Joseph is 44 years old and has been living with stage 4 Huntington’s Disease for ten years. His journey began when he noticed symptoms after his father showed signs and later passed away from the disease. Joseph has faced many losses. His mother died of ovarian cancer when he was just 14. Even though there is a 50% chance of inheriting Huntington’s Disease, both Joseph and his sister got it. Sadly, after losing his father, Joseph also lost his sister at the age of 41.
Our dedicated care team with beloved client Joseph.
Despite these hardships, Joseph’s strength and courage inspire us every day. His story shows the importance of awareness, support, and kind care for those affected by Huntington’s Disease.
Joe’s life has been very hard. His mum, my sister, died of ovarian cancer at 40 when he was just 14. He has watched his whole family suffer, and now he is facing his own battle with Huntington’s Disease.
During Huntington Awareness Month, it’s important to highlight that Huntington’s Disease (HD) is not as well-known as other conditions like MS, Parkinson’s, Alzheimer’s, or Dementia. HD causes nerve cells in the brain to slowly break down and die. It affects areas that control movement, speech, eating, and thinking. Joe, who was once strong and active, is now going through a heart-breaking change. He can no longer walk, talk, or eat without help. HD is a fierce disease because there is no cure.
Joe was always very strong—he loved cycling, hiking, weightlifting, and playing drums. He had a great sense of humour. Seeing this tall, muscular, loving man become so weak is heart-breaking.
Joe's Relative
“As Joe’s closest relative, I do what I can, even though I live in France and am getting older. I rely on Anum Khan and her team from Concept Care Solutions, who help Joe every day. I am incredibly grateful for Sahil and Steve, who always show compassion and understanding. They help Joe with difficult tasks in stressful and cramped conditions. I can’t think of anyone else with such patience and endurance.”
Even though Joe needs constant care, he prefers to stay in his flat, where he feels safe and surrounded by his belongings.
In the UK, about 7,000 people suffer from Huntington’s disease (HD), a hereditary neurodegenerative disorder with limited awareness and fundraising. HD causes progressive brain cell breakdown, leading to physical, cognitive, and psychiatric symptoms. Despite no cure, treatments manage symptoms and improve life quality.
Essential support is provided by charities like: The Huntington’s Disease Association, which offers advice and regional care; The Brain Charity, providing practical help and social activities; and Family Matters, offering resources for overlapping symptoms.
During Huntington Awareness Month, we suggest reaching out to any of these charities for more information and support.
Concept Care prioritises your safety and satisfaction with compassionate, tailored care.
If you or your loved one require specialised home care services for Huntington’s disease or other challenging conditions, please contact us today for more information on how can assist you.
