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Silvana Camaj

Sandra Johnson Name: Silvana Camaj

Age: 24

Where do you call home? I live in Tuzi, Montenegro.

Education/Career: I have a Bachelor of Science degree in Financial Management and a postgraduate degree of Specialist in Accounting and Auditing. Currently, I am completing my Master of Science degree in Financial Management. FA has encouraged me to confront ableist notions about who is qualified to do what.

I choose to re-define my abilities and exceed expectations in my education and workspace to prove to myself and the world that my physical disability does not place limits on my capability. I hope that succeeding in my education and career will inspire my peers and future generations that living with a disability does not mean that you live with "inability."

Who do you live with? I live with my parents, brother, and sister.

 

 

How long have you known you are living with FA? I have known that I’ve been living with Friedreich’s Ataxia since 2005 when I was diagnosed via genetic testing and a careful clinical examination in Belgrade.

Are there any others with FA in your family? My older brother, Kristiani, also has FA.

Describe your transition from walking to walker/wheelchair. Apart from having scoliosis and other progressive issues, I walked unassisted until mid-2011, when I was 14 years old. At that time I began to rely on holding on to family, friends, and support structures to get around. Every year, I walked shorter and shorter distances with increasing instability and loss of coordination. I have been using a wheelchair since 2016.

For a period of time, I struggled to come to terms with FA’s progression and the idea of needing someone’s and/or something’s assistance. With the love, understanding, acceptance. and unconditional support of my wonderful family and right people, I achieved that inner peace I longed for.



What do you like to do to stay active and what type of exercises work for you to stay strong? I like to stay busy with daily activities, mainly studying and work. I do as many exercises as I can on my own, but unfortunately, I don’t do as much as I should. I also have the opportunity to attend a physical rehabilitation retreat on the coast of Montenegro for three weeks out of the year. Here, I have specialized training/therapy and education on exercises. In the future, I would like to see a physiotherapist regularly, so that I can have regularly structured time and training towards gaining and maintaining muscle strength.

Sandra JohnsonDo you have any hobbies or special interests? Since my physical limitations have limited my hobby choices, my main hobbies include reading books, collecting books, and watching movies. I also enjoy playing chess, solving mysteries/puzzles, and listening to music. I’m interested in languages, history, modern technologies, cultures, and traveling.

What is a good trick to make daily life easier? A good attitude towards life and every new day that I get to live. I also chose to surround myself with family and friends who love me as I am, believe in me, and want all the best for me.

When FA gets you down, what do you think/do to feel better? By now, FA doesn’t get me down much. If/when it does get me down, I take a minute to reflect, cry it out, and/or incorporate self-talk to sort through my feelings and thoughts. I remind myself of the good things I have in my life and remind myself to be grateful for having them. I also remind myself that there are worse / more difficult things, and this gives me strength that I can handle my situation. Sometimes drinking coffee, eating some chocolate, and spending time with my cats does the trick.

What is one way living with FA has POSITIVELY affected your life? I experienced a lot of physical and emotional pain for the past 16 years coupled with exhaustion. I wouldn’t say that living with FA has positively affected my life. I had positive outcomes in my life, but, one way or the other, I could have achieved those and much more with ease without FA. My hope for the future is that the positive aspects of FA will be a cure, treatment, or improved management to gain more healthy years and an improved quality of life for all with FA. The main positive impacts living with this disability are that I connected with individuals all over the world who have a shared experience, I became more empathetic, and I became extremely resilient not only in terms of FA but all challenges that I am faced with.

What is a favorite motivational quote of yours? I like a lot of motivational and meaningful quotes, and I do not necessarily have a favorite one. One quote that comes to mind as I reflect on living with FA is Friedrich Nietzche’s concept of “Amor fati” which translated from Latin means “love of fate” or “love of one’s fate”. Applying “Amor fati!” strengthens my acceptance of FA.

What is a piece of advice that someone with FA has given you that encourages and inspires you? “Live your life as you see fit for yourself!”

What is the best advice YOU could give a person who has been newly diagnosed with FA? Whatever FA throws at you, stay strong, let your beauty and strength shine. Life is filled with joyful moments. No matter how big or small they are, be sure to enjoy them. At the end of the day, “Live your life as you see fit for yourself!”.

What is the first thing you want to do when a cure/treatment is found? The first thing I would do is light a candle, and thank God for giving clarity and knowledge required to scientists/researchers for finally finding a cure/treatment.

"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, this quote means that: I have a disability that physically impairs me, but it doesn’t consume me. It is one aspect of my identity, but it does not define me.

Tell us a little more about you… It would take pages to write about myself … In general I am a daughter, a sister, a friend, a person with disabilities, a student, a colleague, a volunteer. I am a person trying to make it through life while living with hardships of FA. I’d like to take this opportunity to thank all those who are working towards finding a cure/treatment for FA and every individual who is shedding light on this rare disease.


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