Scottish Huntington’s Association Trustee Dina De Sousa, who is facing the onset of Huntington’s disease, is marking the start of Huntington’s Disease Awareness Month by colouring her hair blue and purple, the colours chosen to represent the global HD community.
Dina (58), a retired university researcher and mum of two, hopes the dramatic new look will help to spark conversations and raise awareness about the disease, which devastates so many families, including her own, across the generations.
“Huntington’s disease is a thief that slowly steals your body, energy, health, family, friends and the person you used to be,” said Dina, from Dalkeith.
“It’s an extremely complex disease that many people wouldn’t talk about. If it was in your family you didn’t tell anybody. There was a lot of stigma because, amongst many other symptoms, it leads to serious mental illness.
“My late father was diagnosed out of the blue 14 years ago, which was a big shock to us all. He was misdiagnosed for years so we had no idea about our family history. At the time I thought it was amazing that we didn’t know but now I realise it’s a situation that is sadly all too common.
“I was tested soon after my dad’s diagnosis and the result came back positive for the faulty gene. From that moment, my outlook changed for myself and for our sons who we knew, for the first time, were also at risk. I learned all I could about Huntington’s disease so I could advocate for families and patients, and raise awareness. I retired three years ago so I could focus on my health and do what I can for the Huntington’s community.”
In addition to volunteering as a Trustee with Scottish Huntington’s Association, Dina has taken part in many research projects and sits on the Board of the European Huntington Association. Five years ago this month, she joined Huntington’s disease families from across the world at a global gathering at the Vatican organised by Pope Francis. She was Chair of the Scottish Huntington’s Association Lothian Family Branch for many years, fundraising and bringing families together to share experiences and support one another.
“Over the years, Scottish Huntington’s Association has grown its services in response to the needs of families. Founded by families for families, it is now recognised as being one of the best Huntington’s disease associations in the world,” said Dina.
“But there is a lot more we need to do. We want every family, regardless of where they live in Scotland, to have the specialised care and support they need to cope with this dreadful disease, not just for people who have the disease but also for family members who care for a loved one and those who are at risk.”
Dina’s late father Antonio with his grandsons Christopher and Alexandre.