storia malattia di Huntington Lorenzo


Lorenzo, 24 years - Alatri (FR)

My grandmother had Huntington disease. She died in 2004, when I was a child. At the time, we didn't know what disease she was affected by. In the next 5 or 6 years, symptoms have reappeared in all her children: my father, my uncle and my aunt. All of them were tested positive. 

From that moment on, we all live our lives conscious about the disease and its consequences. I also tested positive. 

In my opinion, if there is something  wrong in our health, it’s necessary to acknowledge it. I thought that the best choice for me was to face the reality, whether good or bad, rather than living with the anxiety of not knowing. I decided to get tested without any hesitation and it was a choice that I’d do a thousand times again. 

After receiving the test result, nothing changed in my daily life and habits. The only thing that really changed is that now I’m aware that in the future I will have to deal with this disease. I’ll tell you more, my live has perhaps improved because thanks to the advice of the experts, now I do more physical activity and eat healthier than before. So, in some ways, knowing about the possible problems in advance, has helped me prepare for them.

We must first of all try to get the right information, search for reliable sources. Get advice from organizations like LIRH, that knows exactly how to deal with the whole situation. Having the point of view of other people who share the same situation as you. Get help from all the people that are facing the same situation or are somehow expert about the problem. 

For what concerns my future’s possibilities, I don't feel limited in any way. I am still very young, so maybe it is normal to think so.

I was lucky, because I talked about the problem with my friends and our relationship hasn’t changed at all. Knowing that there are people who love me, has helped me and I am lucky that I can talk and open myself to them. 

I have a girlfriend that I've been dating for six months. When we met, she already knew a little about my problem because she read some things I wrote on Facebook. Then talking and getting to know each other we deepened the discussion, I have involved her more in this situation and we talked about it. We currently live without the burden of this disease in our relationship.

Someone with this problem who wants to built a family, has to make a reasoned choice taking into account all the risks.  I could have a child and transmit him/her the disease. Is this right for him/her? For me? We must deeply think about it. I haven’t really thought about the possibility of having or not children, because I am still young. In the future I would like to have a family, but I still have some time to think about it and make my choice. 

I also hope that the research’s progress could make my decision easier. I’m currently involved in Enroll and HD-Clarity trials and I believe in research. 

During the counseling path that preceded the genetic test, Dr. Migliore from LIRH Foundation, suggested me to get in touch with the association of young adults NOI Huntington. I contacted Marina, one of the board members, who gave me some advice, as a friend, about the testing path that she did in first person.  They helped me, they invited me to one of their meeting, I participated, and it was a great experience. From that moment, I started actively collaborating with them. It is always very nice to see them and do things together. What they do is good, because they try to connect young people, who come from all over Italy, with the same problem . 

We must not let fear overwhelm us, surrender or passively suffer it. Try to keep calm and stay positive. Sometimes when I see my father,  I thinking that one day I’ll be in the same situation and it’s not easy. My father has been showing symptoms for a few years now. He still communicates and normally interacts with others but sometimes he makes speeches disconnected from the context. He walks but occasionally tends to lose his balance a little. He is no longer self-sufficient. Me and my mother have to be always with him, we can’t leave him alone. 

It's not easy for my mom. Having a husband who has this situation is not easy, it is very stressful. I don't deny it, it's difficult to live with someone with Huntington's. There are positive times, but also more negative times. Much also depends on my father's mood. Sometimes I think about how difficult is for my mum to end up with a son facing the same situation of my father. The worst thing about this disease is that is transmitted from a generation to another. I think about what my father is facing and  that in a few years or more, I could find myself in the same situation. It is strange to actually think that I will pass from the one who assists to being the assisted one.

We must learn to live with the disease,  have faith in research and always try to build positives thoughts in order to live peacefully. 

My advice is to keep positive and not withdraw into ourselves. 

This testimony is part of That Disorder-Photography Project On Huntington's Disease 

storia malattia di Huntington Lorenzo