Maria Segretaria testimonianza LIRH malattia di Huntington


A work story (and not only), mine ... a story of sharing, ours!

My story with the LIRH Foundation began a little over 2 years ago, but it seems that i'm living it from much longer because when you deal so closely with the people around you (patients, family members or colleagues) hours, days, months pass by so faster that you can realize. 

I came from a center of reference for rare diseases, but I had never dealt with Huntington's disease and I could not imagine how immense it is the world that revolves around it. 

My previous, over ten years' work experience with another rare disease has marked my path because, if I hadn't had that kind of experience, it would have been much more difficult to approach the Huntington's world.

"Cruel and evil monsters": this is how I've always defined rare neurodegenerative diseases, and this concept became even more "heavy" - like a boulder - when I started my journey with LIRH.

A monster, yes, one of those that unfortunately cannot be defeated with a specific drug to date, but which can still be fought with targeted and personalized symptomatic therapies, and not only.

 "You are not alone! In this battle we are together": these are the words of Prof. Squitieri during an outpatient visit. The patiens reported me those words and, in the following days, they sent me an email to thank all LIRH's team, for the closeness and warmth perceived. This episode is Just an example, that pays back our enormous daily effort and encourages us to go on even better. 

In my opinion a gentle gesture, a smile, even a simple "how did the journey go?", While waiting ... to be called for the visit, to carry out the sampling, or to withdraw the result of a genetic test, can help to bring the thought elsewhere ... closeness and presence can be transimmet even with a small gesture or even through a phone call, let's keep this in mind. 

"Empathy melts the ice, crumbles barriers and builds bridges on which people meet" (cit. By L. Giovannini) - These words cannot fail to leave a mark. The sign that we are there.

Maria Segretaria testimonianza LIRH malattia di Huntington