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Sofia’s NMO berättelse – Alltid en väg framåt (Always a Way Forward)

Posted by: The Sumaira Foundation in NMO, Voices of NMO

The year was 2007 and I had just returned to school from summer break, twelve years old and excited to start the 7th grade with new classmates and new opportunities.

The term started great, and I made a lot of new friends and really had the time of my early teenage life. But just a few weeks in, my right eye started to ache when I moved it. My mother took me to the emergency room where we met a doctor who claimed that I only had a kind of training soreness and that I’ve been sitting in front of the computer too long. Both my mother and I thought this was a bit strange, since I haven’t been sitting that much by the computer. 

We went to an eye doctor instead and they gave me the diagnosis of catarrh in the connective tissue. They gave me some eye drops and sent me home. I was told that the drops could blur my vision for about five minutes.

My vision was blurred for almost two days, and then we returned to the eye doctor. At the hospital, they discovered that, in two days, I had lost almost all of my sight on my right eye.

So the hospital decided to fire up a whole new MRI device to check for a brain tumor or MS. Since I had neither of them, they immediately sent me to the university hospital in Lund (south of Sweden). What I did have was a great inflammation in one of the optic nerves. 

A few days later, and a lot of corticosteroids later, I got the diagnosis of Neurosarcoidosis and it was decided that Prednisone and Methotrexate was the best way to treat me.

For years, neurosarcoidosis was the working theory, and they tried different immunosuppressives with either no or worsened effect.

At one point when my ordinary eye doctor was on holiday leave, the inflammation became so big that it touched both the “bad” optic nerve and the healthy one. Luckily, despite a really embarrassing screw up on the eye doctor fill ins part, the inflammation left no sustainable damage on the healthy optic nerve.

When I got older and moved in order to study at university, I got a new neurologist. And he wasn’t convinced that neurosarcoidosis was the right diagnosis. He was the first one to mention NMOSD, and we decided to make some changes in my treatment, to match the new diagnosis. I got rituximab, or mabthera, and suddenly the relapses started to come less and less often.

I got the new diagnosis around 2017, and now I only get rituximab once a year. Recently I’ve also been able to be without the prednisone pills, and my physical health, as well as my mental health, is now finally improving.

Apart from the loss of sight, I’ve experienced numbness and neurological pain, as well as a fatigue that comes in waves. Despite that, I am working full time as a teacher, renovating an old house in the countryside.

I just got married to my wonderful husband who’s been a solid rock to lean on since the day we met. To have supporting family and friends has been key to my journey. Without the love and unwavering support I’ve gotten from them, I wouldn’t be the energetic and hopeful person who I am today.

Music and dancing has always been a big part of my life, and it is so important to be able to continue doing the things that you are passionate about, even though life doesn’t always go exactly the way you’ve planned. There is always a way forward, as long as you have the will to go on.

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