An ambassador for the Scottish Huntington’s disease (HD) community has met with Pope Francis to raise awareness of the condition.
Part of a worldwide HD delegation meeting his Holiness, University of Edinburgh research assistant, Dina De Sousa led a delegation from the Scottish Huntington’s Association (SHA) to the Vatican.
She met the Pope along with several hundred other people from around the world who are living with the degenerative neurological condition as part of HD Awareness Week.
“This was an unbelievable once in a lifetime experience. It was a day filled with different emotions. Seeing so many people affected by HD brought back memories from my father and feelings to what I’m to face. About 1500 attended. The aim was to raise global awareness and stop the stigma HD families have faced for so many years. I think it was achieved. It reinforces my goals for strong patient advocacy. I am fortunate to be part of such a close knit HD community,” said Dina.
HD is an incurable, genetic condition that usually starts between the ages of 30 and 50 years. It causes three main groups of symptoms: changes to thinking processes – a type of early onset dementia, loss of muscle control and involuntary movements which lead to loss of speech and swallow and mental illness. As it progresses those affected will need 24 hour care. It is also hereditary with each child of those diagnosed at 50% risk developing the disease.
The SHA is the only charity in the country supporting families living with the condition through team of of HD specialists; the world’s only dedicated youth support service and a financial wellbeing helpdesk.
On meeting HD families Pope Francis said:
“Fragility is not an ill. May none of you ever feel you are alone; may none of you feel you are a burden; do not to give in to the temptation of the sense of shame or guilt.”
He also called for more research in order to find solutions to degenerative neurological conditions like HD.
There are about 1100 people in Scotland living with HD and a further 5000 at risk of developing the condition.
Picture shows: Dina meets Pope Francis in the Vatican.