How a LIRH outpatients clinic works: a day in Campi Bisenzio (Florence)

Friday 24 January 2020, 8.10 am: departure towards Florence, to reach Campi Bisenzio where LIRH, from over ten years runs a free clinic for people affected and at risk of Huntington's disease, at at the headquarters of Pubblica Assistenza.

10.30 am we arrive at destination. The patients are already there, ready to welcome us, together with the LIRH Toscana and NOI Huntington - The Italian Youth HD Association volunteers. The Pubblica Assistenza's bar is closed, but no problem, we collect some coins for the coffee machine.

The doctor's visits begin and in the meantime, in the waiting room, people get to know each other and start to talk. M. came with his wife L., they drove from Imola. M. looks very tired, he tells us about their great love, about the constant attentions that he gives her and about of all the effort and torment that all this inevitably entails. He tells us that he would like to be next to her as long as she needs it, but he often feels deeply lonely and helpless as the disease progresses. Their children deny the disease, they live as if it doesn't exist, leaving him alone to take care of L. He needs someone to talk to, but all his friends left him alone. As we speak. L. listens to everything and is aware of everything that we say. M. shows us a photo of the two of them on the bike a year earlier, smiling in complicity. Now it would be impossible, the disease has gone too far.

G. came with his daughter M. His wife passed away a few years earlier. He tells us how difficult it is to meet the costs of a patient with Huntington's disease, especially in a more advanced phase and how difficult it is to reconcile work responsibility as a caregiver. On one side or the other, guilt still awaits you.

After a wile G. and F. also arrive from Florence. We can reassure their son who, in vacation on the other side of the world, was sending us messages to warn us that his parents where hiding there, but got lost. 

Between a visit and another, the doctor and the psychologist appear in the waiting room to greet people and exchange a few talk with them. 

It is already lunchtime, we start getting hungry. M., B's husband, heads to retrieve lunch for everyone. He comes back with 3 trays full of pizzas and sandwiches filled with finocchiona and, to make sure we have everything, one full of pastries and brioches. We eat all together. We smile and talk, it seems to be at a family lunch.

S. also arrives, she looks exhausted. As we speak, she tells us that her first granddaughter will be born at the end of May. She smiles. Despite everything, life is a wonderful thing.

Time passes quickly, it is already 4 pm and we have to leave.

It was a day full of emotions.
Full of pain, of course, but full in equal measure of love, hope and "care".

Everyone accompanies us to the car smiling. "See you soon, thank you, have a good trip!".

The taxi leaves, we remain in silent for a few seconds.

Ohana means family and family means that no one is abandoned or forgotten.

(Lilo & Stitch)

This is how the Huntington Italian League Research Foundation offers clinical and psychological assistance to anyone with or at risk of inheriting Huntington's disease.