“Hi, my name is Fabry and I'm watching you while you're crying…”. These are the words with which 'A piece of you' begins, an unreleased song written by the rapper Blind to talk about Anderson-Fabry disease, a serious and complex rare genetic pathology which mainly affects the heart, but also the kidneys and brain, thus reducing life expectancy up to 30 years. An emotional song, which instills courage and hope and which also accompanies the Fabry Awareness Month, thus officially kicking off the 'Do Re Mi Fabry' awareness campaign, promoted by the Italian Anderson-Fabry Association (Aiaf Aps) with the non-profit contribution conditioned by Chiesi Global Rare Diseases Italy. The objective is to reach a large audience, especially young people, through a fresh and impactful piece of music, to tell what Anderson-Fabry disease is and send a message of hope: to make all the people who live with symptoms of this rare genetic pathology that is often invisible to the eyes of others.
“When we talk about a rare disease like Anderson-Fabry disease – explains Stefania Tobaldini, president of Aiaf Aps – it is never easy to find the right communication levers, which allow us to make the pathology known and adequately describe the experiences of the people who are affected. Our association has always been committed to building campaigns that allow dissemination and awareness on a large scale, especially on the occasion of Fabry Awareness Month, also exploring different communication channels to reach a significant audience. The precious Collaboration with Blind this year offers us the extraordinary opportunity to reach a younger audience through the powerful medium of music. We are very excited about the launch of 'A Piece of You' and we thank Blind for the sensitivity towards the people who live with Fabry's disease and for having given a voice to those who, in dealing with the disease, often feel overwhelmed by the fatigue and indifference of those who do not understand the symptoms, while at the same time bringing a message of trust and resilience”.
The song, the video clip of which is visible on the AIAF YouTube channel – reports a note – was born from the meeting between Blind and the Fabry families, on the occasion of a Campus organized by the AIAF which was held in Bologna last November 2023. rapper was invited as a guest to listen to the stories of patients, family members and caregivers from which to draw ideas for a song on the pathology. A unique and special moment of discussion and sharing, full of emotions for all participants. In the following months the artist had the opportunity, with the constant accompaniment of the association, to dedicate himself to the composition of the song 'Un piece di te'. A work resulting from study and identification which allowed him to grasp many small nuances of the patients' experiences, from the symptoms to the deepest emotions.
“Hi, my name is Fabry and I'm watching you while you're crying/and I know you can hear me/many times you know you're invisible/while you try/you try again and again/you're leaving me a piece of you/but we don't we're alone when we're out/because everything changes but now you face it.” Words taken from the song by Blind, who explains: “When I approach a new job I try to make it mine immediately. For me it was fundamental to come into contact with the stories of people who live with a rare disease because they helped me understand better what are their fears, the emotions they feel towards the disease and their hopes”. 'A piece of you' “talks about the courage to react despite your condition – continues the author – and encourages you not to feel alone even if the world outside sometimes treats you as if you were invisible. I hope that the message of this song reaches strong because it reached my heart.”
“With the 'Do Re Mi Fabry' campaign, through the universal language of music we want to speak with a new tone about Anderson-Fabry disease, encouraging a profound communicative exchange between those who live with the pathology, their families and those who do not have it know – declares Alessandra Vignoli, Head of Mediterranean Cluster of Chiesi Global Rare Diseases – As a company, we are committed to supporting the community of people living with a rare disease and those who take care of them, with projects that use a universal language such as of music. In this way we can tell stories of hope, challenges and triumphs, and promote greater empathy and acceptance of the pathology.”
Fabry disease is a rare genetic disorder that is part of a group of disorders called lysosomal storage diseases. In particular, it is caused by the total or partial deficiency of the lysosomal enzyme alpha-galactosidase A, necessary for the degradation of some lipids, the most represented of which is the sphingolipid called globotriaosylceramide, abbreviated as GL-3 or Gb3. The accumulation of Gb3 in visceral tissues and in the vascular endothelium of the whole body can cause damage to the kidneys, heart and central nervous system such as to compromise quality and life expectancy. The symptoms are pain, even very severe, in the limbs (painful acroparesthesia), fever, tiredness and intolerance to exertion, excessive heat and cold, sometimes also hearing and vision disorders, non-specific symptoms which make the diagnosis rather difficult which can arrive in adulthood, even with great delay. For the non-invasive diagnostic confirmation of Fabry disease, the enzymatic assay of alpha-galactosidase A and the genetic test based on the sequencing of the Gla gene are fundamental.
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