42 years old, lives with Neurosarcoïdosis

“Hi! My name is Hannah Siedek, I am 42 years old, PACSed and the mom of two children, Hugo and Sophia, 4 years and 8 months old.

I suffer from a rare disease called Neurosarcoïdosis which is similar to a chronic meningitis. I have been healthy, sporty, and energetic person until 2012, when I ended up with strong vertigo, an encumbered optic nerve on my left eye, a tinnitus and very strong fatigue. The disease hit me literally from one day to the other and I spent around 8 months in and out of hospital in Frankfurt since it was complicated to find a diagnosis. End of 2013 I had a light stroke and then  the doctors suggested a biopsy, i.e. to open my scull and analyze the inflammations on my meninges. I had been hesitant about this option since I thought I was not ill enough to justify opening my skull. However after the stroke, I felt I really needed to know what was wrong with me, also since the man in my life, Kaspar, who spent days working from my hospital room, needed hope that at some point his girlfriend or now wife would be healthy again.

With the results of the biopsy, a Luxembourg neurologist at CHL was able to diagnose the Neurosarkoïdosis and start my treatment which with cortisone and some enhancers.

However, I would not like to tell you about my disease but more about the impact it had on me. It sounds awkward, but I am almost happy it happened. I was very (!) hard working before, neglected friends and family. I guess I needed this fist in the face to set my priorities straight.

Having a rare disease is scary since doctors are not 100% certain how to treat you, plus there are few or no reference cases you can compare yourself with.

There is always the question “why me” and even though I know that it is a stupid question, I still ask it today. For some time, I felt I was being punished for something I had done. Evidently, this is rubbish, but it is difficult to just accept that the disease “fell” on me… and not on you.

Today, I am lucky that I can live a normal life. I still need to do my annual MRI check up and take my 5mg cortisone pill every morning, but these are the only things that remind me of my Neurosarkoïdosis.

Thanks to my doctors, in Luxembourg and Paris, I was able to have two kids with Kaspar and we are living a very, very normal life in Luxembourg, a part from the sleepless nights, very early breakfasts and messy living room, but these things are not due to my disease but rather due to my two little munchkins.”

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