I was diagnosed with MS when I was twelve years old
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MS affects children as well as adults, with at least 30,000 people under 18 living with MS. Beatriz from Brazil was diagnosed with MS was she was just twelve years old. She reflects on that experience and what she has learnt since.
Hi, I’m Bea and I’ve been living with MS for over thirteen years. I want to share a little bit about my journey to diagnosis with you all. I remember it like it was yesterday – the day I woke up feeling like my tongue was tingling. I’d always been a very anxious child, so my parents thought it was just another anxiety attack. But within a week this tingling had spread to the entire left side of my body. That’s when I started hurting myself unintentionally bumping my foot on furniture corners, accidentally burning myself and not feeling any pain. My parents took me to the hospital and the doctors began doing various tests to assess what could be happening.
It was then that my first two lesions showed up on an MRI scan, however it still wasn’t enough to confirm the diagnosis. I went home with just some painkillers. About a year later I had a new flare-up and in this one I ended up losing strength and sensation throughout my entire body.
I couldn’t feel anything from the neck down and I was unable to walk, unable to move, and I couldn’t do anything on my own.
So it took about a year for my diagnosis to actually be confirmed – that’s when I sought out the Brazilian Multiple Sclerosis Association. They helped me with referrals to professionals that could help. That’s where I met my neurologist who’s still my neurologist today. She confirmed my diagnosis and I started treatment as soon as possible.
It wasn’t an easy journey but I always had my family very close by my side, supporting me through all the tests and all the treatments such as therapy, physical activity and diet. My family was always there for me, supporting and encouraging me.
Of course thirteen years on since diagnosis, I have faced many challenges. But after I started treatment, my quality of life changed a lot. I started eating better, exercising, accepting therapy as a therapeutic process and doing other complementary therapies that helped. This changed my life completely, transformed it.
What really helped me understand the diagnosis and to accept treatment was embracing the idea of living day by day. It’s not easy to have a diagnosis of an incurable disease, but there is treatment and quality of life.
If I could go back to when twelve-year-old Bea was being diagnosed, I’d like to give her a message. I would also like to give a message to those who are being diagnosed now. It’s not going to be a smooth journey but it is possible to have a quality life. I thought I would never have a future and that I would never be a normal person, but you know what no one is normal anyway. We all have small problems in our daily lives that make our lives a bit more difficult but that’s alright.
We live one day at a time and the sooner you start treatment the better because you can also have a better quality of life. Although there is still no cure, there is treatment, and we can have a quality healthy life even with an incurable diagnosis.
So don’t give up on your dreams and don’t give up on living each one of them for thinking that MS will take that away from you, it’s quite the opposite. Always be yourself and dream big because a diagnosis doesn’t define you.
Our thanks to Beatriz and the Associação Brasileira de Esclerose Múltipla.
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