Today, on Women's Day, the LIRH Friuli Venezia Giulia Association is officially born.
Today, March 8, 2024, we are not only celebrating the international Women's Day, but also the birth of a new Association, named LIRH Friuli Venezia Giulia, thanks to a women, Annarita! The 'LIRH family' keeps growing.
Please, meet Annarita:
"My name is Annarita, 52 years old. I am a nurse. I have thirty years experience in the field of General Medicine. I currently work in Radiology, dealing with Magnetic Resonance Imaging and CT scans. I would describe myself as an empathetic person, with an expansive and "explosive" character.
34 years ago now I met Mara, she is also a nurse. At that time, her father was in an advanced stage of Huntington's disease. After few years, also his brother Vanni became sick. I shared this path of life and illness with them, who are my second family.
At the time, little was known about HD, or at least that was the case in Friuli Venezia Giulia, the area of Italy where we live.
To help Vanni, who fell ill in an advanced stage of HD before the age of thirty, we toured all over Italy: Milan, Bolzano, Trasacco... We were looking for all the possibilities to improve his quality of life, taking any route we came to know. However, we felt the lack of someone who could give us a "conduct" in the overall management of his, and our, difficulties,.
In January 2023 Mara was tested HD positive. We found ourselves lost.
The Neurology Department of Udine, immediately contacted, was unable to give us any response for a month and a half... In the meantime we started doing research online.
One day I came across an interview to Prof. Squitieri by the University of Padua and, almost at the same time, his name was also mentioned to me by a psychologist who works at the Rare Disease Center of Udine (particularly specialized in rare metabolic ones).
We therefore contacted LIRH Foundation and entered its "universe". Once in its outpatients' service in Rome, we felt immediately "hugged". By 'we' I mean Mara, myself, Annamaria and Giuliano Mara's sister and brother-in-law .
Mara took part in the Pivot HD trial and thus met many people connected to LIRH. In particular Vladimiro, member of the LIRH Sardinia board of directors, who talked to us about their local LIRH Association.
At the LIRH Annual Conference in Rome in December 2023 we also had the opportunity to learn about the experiences of the other regional LIRHs (LIRH Toscana, LIRH Puglia, LIRH Sardegna, NOI Huntington): the lack of something similar throughout the north-east of Italy, combined with our past experience, made me feel it was important to set our own local organization, to ensure that those in our situation can have tools to avoid facing the difficulties that we had to face, to not feel alone, to be able to build a network of support and knowledge.
Our positive experience with Lirh needed to be shared, as well as our daily life experience. Everyone can make a difference, in terms of sharing ideas, strategies, paths, perhaps even small solutions.
Now we are at the beginning, there is a lot to do, above all we must create our families network, but also promote initiatives, produce a cultural change in healthcare professionals and in society in general, and we will do this together with the other LIRH Associations and the Foundation, because everything is possible, if there are many of us.
Anyone who lives in Friuli Venezia Giulia or neighboring areas and wants to connect with us, please get in contact via e-mail: friuliveneziagiulia@lirh.it
Thank you,
Annarita Ciociola
President, LIRH Friuli Venezia Giulia
"The setting up of a new regional HD association committed to better knowledge of Huntington's disease and better care affected people demonstrates that there is still a lot to do to generate awareness. The choice to join the network of families connected to the Huntington Italian Research League fills us with pride" - states Barbara D'Alessio - President and Executive Director of the LIRH Foundation.