Profile : Fernando Hernández Fernando runs the bilingual website, Distoweb and has agreed to interview with us.
Dystonia Living Magazine: Fernando, thank you for agreeing to interview for Dystonia Living Magazine. I don’t know if you realized this, but your website, Distoweb, has been an inspiration and resource for many. How old were you when you experienced your first symptoms of Dystonia? FH: I was 10 or 11 years old. I started to lose skills gradually. It was especially painful to leave my studies in classical guitar. DLM: When were you diagnosed? FH: At age 17, after many years, I was finally diagnosed with Dystonia. It was the 70s and not easy to ‘label’ the disease. DLM: How does Dystonia affect you physically? FH: It affects my walking and when taking any action that requires dexterity, like writing. Also, I suffer pain in the joints of the hand and back, and I feel constant spasticity in arms, legs and back. FH: These last two years. DLM: This issue of the magazine has a special focus on psychogenic diagnoses. Have you ever been told your Dystonia might be psychogenic? FH: Well, when I was a child the doctors mentioned a kind of a 'brain failure', which scared my parents. Since 2007 I know it is genetic, due to the torsinA DYT1 gene. FH: I was a child and could not understand too much. Although, very soon I had to understand life as an adult. I remember the panic I felt when I was scheduled to have an electromyography (EMG) and other tests. DLM: What are your thoughts on the state of diagnostics for Dystonia? FH: Times have changed a lot, fortunately. Today everything is much easier than 30 or 40 years ago. The uncertainty of diagnosis, at least, has almost disappeared due to medical advances. DLM: What path did you take in education & why? FH: Since I was very young, I bet on studying and also those hobbies that could enrich me (music mostly). I admit I needed lots of help and understanding in my formative stage. Luckily, I got it. It is very important. DLM: What kind of work do you do? FH: I work as administrative officer in a multinational pharmaceutical company, and I don’t have too many problems. Computers have always helped me a lot. DLM: Have you met any challenges in your career due to Dystonia? FH: Of course. Dystonia challenges you every day, at every moment. The key, though not easily done, is to understand the Dystonia as much as possible and ask for help. You can ask for help in the same way that others, with their own difficulties, can ask for your help. FH: It affected me and still affects me, maybe less. It’s still hard for me to be introduced to others. However, when I decide to build new relationships I know I can be much more sociable than most people. Fortunately, social networks have greatly changed the ‘scenery’ making it harder to feel lonely or isolated today. FH: Nobody. I embraced this adventure alone. Although, some friends of mine help me very closely at present. FH: Honestly, I'm not sure. I guess the influence of my wife, who has multiple sclerosis, is really important, because it also makes me a caregiver. My son is another driving force for me. The main thing is that I know this effort helps others. FH: I just want to send as positive and a practical message as possible. In fact, I feel obliged to share everything that might be useful. FH: I want… imagine a world full of people without any fear; the closest thing to happiness that comes to my mind. DLM: Thank you so much. Is there anything else you’d like to add? FH: My name is Fernando Hernández. I was born in Valencia-Spain in 1964. I am 45, married and a father to my 11 year son. I would like to transmit this message from the bottom of my heart: I feel that limitations are not that strong if you definitely desire to build. DLM recommends you visit Distoweb, where, in Fernando's words, "you can visit a place where the author deals with dystonia and other movement disorders from a positive approach."
Dystonia Living will be interviewing someone from the community of those affected by Dystonia in each issue. If you're interested, contact us.
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