PANS/PANDAS syndrome: President Meloni’s video message
Friday, 8 March 2024
President of the Council of Ministers Giorgia Meloni’s video message on the occasion of the presentation of the book “Il mio viaggio nell'oscurità" by Nicole Minardi, held at the Chamber of Deputies.
[The following video is available in Italian only]
Good morning everyone and thank you for this invitation.
I am very sorry not to be there with you in person, but it was nevertheless really important to me to send you my solidarity and affection, and my support for this initiative. Special greetings to Nicole, her mom Ketty and all the members of the ‘Associazione Genitori Pans Pandas’ [Association of PANS/PANDAS parents]: thank you for what you do every day, thank you for raising awareness about a syndrome that many people still don’t know about, but that in actual fact affects a lot of Italian families. Thanks also to all the doctors, experts and professionals who are there with you and have taken this cause to heart, providing their support on a daily basis. It is above all thanks to their work that we are seeing such progress being made.
I would like to address Nicole personally for a moment. I met you a year ago at Palazzo Chigi, together with your mother, Lucrezia and her mother Stefania. I realised at once that I had a ‘warrior’ in front of me; a warrior with beautiful eyes, I remember them well, who doesn’t say much but who knows her stuff and doesn’t give up. You have been very courageous; you have had the courage to tell your story in this book, to talk about your nightmares, your fears and your moments of difficulty. This is not an admission of weakness, but rather a tremendous act of strength, determination and tenacity. And you did it because you knew that it was the right thing to do, that knowing about a problem is the first step towards tackling that problem and hopefully resolving it. So, thank you. Thank you for what you have done for yourself and, perhaps much more, for everyone else. I look forward to seeing you at Palazzo Chigi and I hope I’ve earned a signed copy of the book; it will be a pleasure to see you again.
You know better than I do that there are still no guidelines for the diagnosis and treatment of PANS/PANDAS syndrome. This is still being discussed by the scientific community and the road ahead is complex, but we have chosen to make our contribution: the Ministry of Health has established a medical-scientific working group to address all aspects of this syndrome and it is carrying out its work with diligence and determination. I know that Undersecretary of State Gemmato, who is in charge of following rare diseases, has also taken your cause to heart and has been following you since day one; I think you are in good hands.
I have nothing more to add other than to once again say: be strong! It may be difficult, and I can only imagine what you have to go through every day to give your children the care they need, but you have always been courageous, and I am sure you will continue to be, and that is what makes the difference. I stand with you, in my own small way, as indeed does the entire Government.
Thank you, and I wish you all the best with your work.
[Courtesy translation]