#ShowUpForHD: Huntington disease has many faces, what's yours?
Throughout the whole month of May, the International Huntington Disease (HD) Awareness Month, LIRH Foundation will carry out an awareness campaign named #ShowUpforHD.
Also known as' Ballo di San Vito 'or' Taranta ', due to the related involuntary movements, that look like an uncontrolled dance, in the past people were even afraid to call Huntington Disease by name, they’d rather call it ' that disorder '. Those affected were accused of witchcraft, whole families were bearers of negativity and suffering and set on the margins of society.
Over time, this has inevitably generated a defensive attitude: the people affected have hidden themselves from the 'others', rather than coming out and possibly asking for help.
More recently, thanks to increased awareness and the rise of a stronger trust in research, opposition movements have set up, both globally and locally.
Various initiatives were promoted with the aim of encouraging the people with the genetic mutation responsible for the disease and their family members, to 'come out' and not hiding anymore. Above all, the initiative known as HDDENNOMORE- No more Hidden - Oculta Nunca Mas, which on May 18th 2017, brought together for the first time, around a thousand families from different Countries of the world, in front of the Holy Father and brought International attention to the disease.
But, unfortunately, Huntington's disease is still hidden.
More efforts are still needed to truly bring it to a global attention. HD is still described, most of the times, using "analogies or opposites" of other pathologies. Huntington's disease is often described as the combination of Alzheimer's, Parkinson's and ALS, three intimidating diseases, already considered individually.
The truth is that HD has its own history, its drama and its distinctive specificity: Huntington affects in different ways; deprives individuals of their identity, transforms them into someone different and slowly modifies their personality; it has a very strong stigma in its history, linked to the heredity and to the mental disorder. It is also a disease that forces to wonder about the future because, although predictable in advance through a genetic test, its onset is not yet preventable.
However, on the other end, it claims the presence of an extraordinary global community made up of organizations and networks of patients and researchers, which is making great contribution to research, thus contributing to tracing the path towards a cure.
'ShowUp for HD' is the invitation, to all those who have a connection with Huntington's disease, of whatever nature it may be, to show their face.
Patients, family members, friends, people at risk, gene carriers, medical professionals, experts and researchers: all these people exist with their wealth of humanity, experience, dedication, suffering and hope with which they face, and hopefully soon will defeat, the disease.
The campaign ‘Show Up for HD’ is addressed to all those who believe that in order to fight Huntington's disease it is necessary, in the first place, to come out of the darkness.