Cristiana, 56 years - Rome
I inherited Huntington's disease from my mom. She showed the first symptoms late, around the age of 60. She had some motor problems, her arms' movements were very controlled, but her legs never stayed still, especially while she was resting. She felt uneasy walking, because her feet would rub constantly. By observing her, I noticed particular facial characteristics that I also found in other HD patients. My impression is that at one point, as the disease progresses, people' traits change a little bit and become similar one another. My mom had a sister who also had the disease. My grandmother died quite young, before she showed any symptoms. She was one of seven children, six of whom inherited HD. My great-grandmother had HD too: she was from a small country town where everyone considered her mentally ill. One of my grandmother's brothers was taken to an asylum. My brother did the genetic test before he got married and he tested negative. He was therefore able to have two beautiful children, obviously not affected by HD.
I found out that I had inherited Huntington's two years ago. From that moment on, my life revolves around this disease, which has radically changed my lifestyle. Fortunately, I was able to decide to quit my job, supported by my husband. We found out about my condition and together we take all the most important and difficult decisions. I consider myself lucky to have been able to make this choice and to be free to live my life and also my illness with 'serenity'. Especially having the joy of being able to face everything with the support of many people who are close to me and whom I have met along my journey. As I still don't have very evident symptoms, I manage to be quite independent and carry out many activities together with my husband. Quitting my job has given me more freedom than before; it has changed the way I see and live my daily life. Today I am more determined, I have regained my independence, the freedom to decide what to do on a day-to-day basis. It has not been an easy process. In the end, it's only been two years, not a long time, since I was diagnosed, but I feel good and ready to face anything.
The disease has helped me: it has given me more strength. At the moment, I have absolutely no fears. I have learned to live with my condition and to try only of being happy.
I immediately started doing physiotherapy at San Raffaele in Rome: three times a week, for three hours. I do motor rehabilitation, psychotherapy, occupational therapy and speech therapy. Now, with the Covid emergency, therapies are online, via Skype.
Covid-19 has become an opportunity for my husband to decide to quit his business and be closer to me. Our plan is to move to Umbria, where we have a small house. Everything would be more comfortable and easier there, it is a very quiet place.
I'm taking part in a clinical trial and this makes me feel good, it makes me feel more peaceful. I know that even though I'm sick, I can still be useful for me and also for others. I can help research. This is very important to me. It is also an opportunity for socialization: getting in touch with other people from all over Italy who share the same experience as mine, to discover San Giovanni Rotondo, a place where I had never been before. It becomes a way to give a meaning, a purpose, to the disease I have.
As I got to know other families, I realized that, truly, Huntington's has many faces. I have met people with aggressive manifestations and violence towards others and themselves. I have met HD patients much younger than me, so I consider myself lucky.
I have not had children, not by choice but by chance, but at this point I give a meaning to everything, also to this.
You need to be so strong and so hopeful. You find strength within yourself. Help and support come when you don't expect them anymore. We met LIRH by chance: a precious help in the most unexpected way. We shouldn't be afraid to ask for help.
This testimony is part of That Disorder-Photography Project On Huntington's Disease