Name: Julia Mancebo López
Where do you call home? I live in Madrid (Spain).
Education degree(s): I graduated in pharmacy. For me, it's really important to have had this education, but i haven't worked in this field.
Who do you live with? I live with my husband and my son that is 22 years old.
What's a typical day for you? A typical day for me is to be alone in the morning at home, eat breakfast, do some exercises (what i can do alone in my wheelchair), then i have lunch and then i take the car to go to work full time in the evening, and finally, i arrive home at 22:00 (10 pm).
How long have you known you are living with FA? I was diagnosed in 2003 with genetic tests, but i had symptoms since 1993 approximately.
Are there any others with FA in your family? Yes, I have an older brother with fa.
Describe your transition from walking to walker/wheelchair. In the beginning, I used to walk alone. Then I needed someone else's support to walk. Then started to use a crutch and when I passed the exam to enter to a public institution 10 years ago, I started to use a walker. I started to use the wheelchair only for long distances in 2013. I've started using it more since a year ago.
What do you like to do to stay active and what type of exercises work for you to stay strong? In order to stay active, what I like the most is to work. It has given me life to socialize, and to feel I'm useful. To me, this is the best therapy. But in addition to this I do wheelchair yoga and stretches.
Do you have any hobbies or special interests? I like to get out and receive sun rays in my skin and feel the air. I also like to travel, visit museums and expositions.
What is a good trick to make daily life easier? I don't have tricks. For me, it's important to have autonomy as long as possible. While you can still do things by yourself, keep doing them without depending on anyone.
What is one way living with FA has POSITIVELY affected your life? For me, it doesn't have positive things. I honestly would prefer not to even know about ataxia, but I have it, and I can't do anything different than to fight for my life.
What is a favorite motivational quote of yours? Go ahead.
What is a piece of advice that someone with FA has given you that encourages and inspires you? No fa'er has given me any advice, but all the fa'ers I know have taught me you have to fight to go ahead.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? I would tell him not to leave, to go ahead, and get what he looks for in life. Ataxia does not affect all people equally. Each one of us is different, as it happens with all the facets of life.
What is the first thing you want to do when a cure/treatment to FA is found? I haven't thought about it. I assume that we will have to work a lot to reach the physical level that fa has taken from us. Then, I would like to do anything. It may look foolish, but i would love to do things I cannot do now. For example, clean, cook, walk, shower standing up....
"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? To me, it means I don't consider myself a sick person. Having fa is something that makes me different from others. But society is diverse, so we are all different.