1. Gretel Vanseer Gretel Vanseer Belgium says:

    Thank you for this article! Especially the link to the psychological side is mostly underestimated. I have been diagnosed in October 2015. We have tracked backed the disease as early as 2004 based on pictures and comparing the deformation of my nose. I have felt for years things were not normal - "feeling like a 70 year old". It was dismissed as being stressed by work (why NOW?), being overweight (i don't think i am fat!), and not exercising enough (I am im pain all the time, how can I??). By last summer I was no longer able to function: I couldn't walk without serious joint pain, I couldn't use my arms as they were numb half of the day, extremely emotional, completely exhausted by the sleep apnoea. My long specialist treating the sleep apnoea was the one recognizing something was really wrong. But even then doctors were hesitant, as if they were thinking that I looked too normal to be so ill. The moment we had the lead, it was in my mind crystal clear that I had this decease. It took the doctors 7 weeks to confirm I had it. End of November the tumor was removed. Had complications - leakage of brain fluid - operated again 2 days later. In january the IGF-1 values were back to normal. February started to work again. Since 1 month I have symptoms again and new symptoms (short term memory loss, disorientation, difficulty connecting dots in complex work related matters). IGF-1 is back out of range. It is clear i will never be the same as I was before and I will never be able to perform on the level I did. Luckily I work for a great company which recognizes the value of 'half a Gretel' vs 'no more Gretel'. Next week I will find out the next steps in treatment. I am not hopeful.

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