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Indiamara Zanandréa

Sandra Johnson Name: Indiamara Zanandréa

Age: 31

Where do you call home? I was born and live in a little town in Rio Grande do Sul, a southern state of Brazil that shares borders with Argentina and Uruguay.

Education/Career: I took a technical nursing course after finishing high school but didn’t get a degree because at that time FA was progressing fast. I chose to take courses over the Internet because they were shorter. So far, I have taken almost 10 courses. I love to study and learn new things and I intend to continue taking courses online. Due to the physical limitations that FA brings me, it is much more comfortable for me. I can do it from anywhere if I have a notebook, a cell phone or tablet and, of course, a good Internet connection.

Who do you live with? I am single, have no children and I live with my parents.

What’s a typical day for you? I usually wake up early, have a good breakfast and then do my physical activities. After that, I study and plan the activities for the rest of the day. Generally, during the day, I help my mother. She works with direct sales and I do it all over the Internet. At night I like to study, eat something light, go to bed and wake up early the next day.

 

How long have you known you are living with FA? I was diagnosed at the age of 23, but the symptoms started early. They were light and I ignored them for a while, but they persisted and got worse. I finally decided to investigate what I had and discovered FA.

Sandra Johnson Are there any others with FA in your family? Nobody else in my family has FA.

Describe your transition from walking to walker/wheelchair. I used to work in a hospital and at some point felt that I was no longer able to help patients. When I learned about my diagnosis, I decided to quit. Besides the fatigue, I was emotionally shaken by the news. The work experience prepared me for the need to use supportive devices. Today I can only walk with some assistance, but it is still what I do the most. I only use the wheelchair when I have to go out and walk long distances.

What do you like to do to stay active and what type of exercises work for you to stay strong? I love working out, going to the gym, doing physical therapy, everything that puts my body in motion if I am able to do it.

Do you have any hobbies or special interests? I love to travel and intend to visit several countries.

What is a good trick to make daily life easier? My trick is to focus on my dreams. It gives me energy to carry out all my daily tasks of the day with energy and enthusiasm.

When FA gets you down, what do you think/do to feel better? This is difficult but when it happens or I feel it is coming, I immediately put on a very lively song. Before it ends, the blues are over!

What is one way living with FA has POSITIVELY affected your life? I learned to thank the problems caused by FA when I realized that they were actually a kind of gift: FA made me a more mature and balanced person, it helped me to connect with my inner self and opened my eyes to new opportunities that I would not have seen without FA.

What is a favorite motivational quote of yours? Nothing beats routine.

What is a piece of advice that someone with FA has given you that encourages and inspires you? I heard a person with FA talking about her achievements. She motivated me to fight even more to make my dreams come true.

What is the best advice YOU could give a person who has been newly diagnosed with FA? Focus on what you can control and do what you are still able to do. Don’t feel discouraged because there isn’t a cure yet. Follow your doctor’s recommendations and enjoy the life you have everyday.

Sandra Johnson What is the first thing you want to do when a cure/treatment to FA is found? When a cure comes up, the first thing I want to do is to enroll for the treatment. The following step will be to follow my purpose in life.

"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? Living in spite of FA is not an easy task but it is possible to live without letting the disease control you. We should always try to go a step further, to pay attention to our own essence, it is to develop new skills, let life flow and follow your dreams. When we do that, we contribute to making this world a better place to live.

Tell us a little more about you… I am a dreamer, I love goals, challenges and achievements. I am curious and investigative. I love adventures. I am a mixture of things, and in this mixture of things I found my balance and it makes me very happy to live life!


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