Zolgensma, the world’s most expensive medicine, THAT SAVED MY LIFE.

SMA, or spinal muscular atrophy, a disease for which, until recently, there was no treatment.

Without treatment, the disease can be fatal in infants. It causes the loss of movement in all the muscles in the body — meaning the loss of the ability to move, swallow and, eventually, breathe.

This medication was approved by the EMA on 19 May 2020. A few months later, on 16 December 2020, the Czech health insurance company VZP began covering this miracle treatment.

But there are still many questions and uncertainties.

So far, studies on treatment with Zolgensma have only followed patients for five years. Among other things, the medication may not be suitable for every little body. It can cause numerous side effects, including damage to the liver and immune system, so patients must meet certain medical criteria and have suitable test results before they can receive it.

As you can see, this really is an unpredictable disease, and what the future holds remains uncertain. However, medicine continues to advance, so we hope for further progress and new discoveries.

And now, a little more about me.

Fortunately, my little body was suitable for the treatment, so I received the medication just 14 days after my diagnosis, specifically on 5 May 2022.

You’ll find out all about the preparations and how everything went in my next post.

E.