Huntington’s Disease: NGO Raising Awareness Over The ‘Shame’ Patients And Their Families Experience To Launch In Malta
A new NGO looking to support patients of Huntington’s disease and their patients by people who have first-hand experience with the illness will be launched in October.
“We have Huntington’s disease in our family and it hasn’t been easy seeing the impact over the years,” one of the members behind the association said.
“It seems that this disease comes with a lot of shame and there seems to be a feeling of hiding it from others.”
“It’s quite rare and many people aren’t aware of the symptoms.”
Huntington’s disease is a progressive brain disorder that causes uncontrolled movements, emotional problems, and loss of thinking ability (cognition).
Adult-onset Huntington’s disease, the most common form of this disorder, usually appears in a person’s thirties or forties.
Early signs and symptoms can include irritability, depression, small involuntary movements, poor coordination, and trouble learning new information or making decisions.
People with this disorder also experience changes in personality and a decline in thinking and reasoning abilities.
The association was formed to offer support for people who have this condition, creating a space for solidarity, knowledge, and awareness and improving the lives of those with the disease and their families.
“It hasn’t been easy growing up with the condition in our family though I feel once we get the word out there that our NGO exists, I think it can be very supportive to come together as a community and find ways to support each other,” Cachia said.
“We would like to see more HD specialists on the island since patients need specialised care.”
This would include a specialised centre, along with neurologists, psychologists, physiotherapists, nutritionists, care workers and all relevant professionals that can support specialised care for HD patients.
“Even though it is rare, I suspect there are many families in Malta who have the HD gene. Our request is to those who feel afraid and alone with the condition to reach out to us so we can figure out ways to support each other in this,” she said.
As an association, the NGO aims to also lobby with the government to increase support for HD patients, organise social support activities for its members, and keep its members up to date on developments in the community.
The association was meant to be up and running in 2020, but COVID-19 derailed plans.
It will now officially launch on 22nd October 2022 at an event at the Imperial in Sliema between 4pm and 7pm.
The launch is for anyone interested to hear more about the organisation and ways to be involved.
To book your attendance please register here. Anyone wishing to volunteer and help us with the launch please so get in touch at [email protected].
People can also donate by calling this number 7742 8416.
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