I Have a Rare Condition - Ataxia UK

I Have a Rare Condition

Post Published: August 1, 2023

Meet Laxmi, she lives in India and has Friedreich’s ataxia (FA). In her blog post, she explains the importance of family support! 

I want to tell you a bit about myself. I was born like a normal child; I used to dance and do Taekwondo. But gradually, weakness started to overtake my body. I did not know what it was. Maybe it was something normal, just basic fatigue. I took vitamins, but nothing changed, and I still felt weak.

My handwriting started deteriorating, and I became slow at doing things. This was when I started to question my situation. I felt as if I’m not worthy of anything, so I decided not to study anymore. Eventually, I stopped socialising, as well. I told this to my mum. My mother explained that I should study and move forward because education is man’s greatest power – she boosted my courage. I continued my studies but could not get good marks in my exams because of my slow handwriting.

I used to give exams in the normal category only, even after working so hard, I used to feel very disappointed to see low marks. My parents never beat me down for it, and instead, they used to cheer me up a lot. Just like that, I completed my studies. In the meantime, when the pandemic came, I had many problems with my feet and needed support.

I was diagnosed a year ago with Friedreich’s ataxia (FA). Before, I could walk, but after the pandemic, I needed support. Since this condition had weakened my body, I used to have very negative thoughts crossing my mind. But my mother gave me the confidence to pursue my career and not overthink it.

With the support of my parents, I got a diploma in computing and done teaching. Through these ups and downs, I have learned that life is not easy, but if parents are supportive, the path is good. If negative thoughts come in life, then make your mother your friend because when trouble comes, all friends leave, but parents never leave us. It’s been nine years since my symptoms, but I still do not use a wheelchair. I am hopeful. I am motivated enough. I’m considering working, and that will be my starting point. I can write well slowly. I know this condition is progressive, but I will not let it dominate me. I exercise at home. My two sisters also have the same condition. We all live happily because of Mum’s courage.

I have this condition, so I know that when we lose hope, our legs stop working, and we should not lose hope. Trying to walk will reduce the use of wheelchairs. Parents worry a lot about us. But they don’t show much. People around us run. I also feel like running, but my body does not support me. We should not give up; we cannot walk like normal people, but everyone has some or the other talent. We should show that talent. We must show those who say we can’t do anything that we are capable of everything. We have to have faith. Because whatever God does, he does it for the good. We have never seen God; this is his identity as a parent. We should give our best.

It does not matter how slowly you go as long as you do not stop. If someone offers to help, don’t assume you are weak; instead, see it as a good gesture and that there are still kind people out there. Because some people pull us down, speak ill of us, taunt us, demotivate us. Ignore such people and go ahead and show that we, too, can do a lot because a bright future awaits us.

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