Made it to Madrid on one of the only planes not being canceled due to the snowstorm, just in time to take part in the patient advisory board.

The last two years have been dotted with ups and downs for me coming to terms with my illness, freak of nature or extreme bad luck, however you want to call it. Through some Facebook closed groups I got connected to fellow patients which helped me a lot to feel a bit more normal again (“I am not seeing ghosts!”). Also through that medium I got to know of the search of the pharmaceutical company producing my wonderdrug for patients in Europe who were willing to share their experiences in order to further improve the usability and communication around the drug. Thought that would be a good idea to at least have a better sense of control of my own destiny. I also had a lot of unanswered questions related to how the drug was discovered and future plans. So I submitted my candidature and a week later I had a discussion with a sort of middle man company which aims at bringing patients and pharma companies closer together.

So last December, the 11th to be precise, it was departure time. It would be a very short trip of only two days. That is if I was able to make it… That day I had to be in Brussels for my check up. Nothing special, except it started to snow… more and more. By the time I got there, it became apparent, it would be a challenge to get anywhere by car or something else. We are not used to snow here, and especially not driving on it. I was able to get to the airport safely and timely. But then it started to dawn on me… flight canceled, another one, another one, … huh? why? Because there is some snow? I used to work in Oslo, and they didn’t seem to care too much. No news on my flight. The gates were changed from close to the shops and restaurants to all the way to the end of the terminal, clearly intended to free up space for the lines of passengers stranded at the airport and trying to speak to a customer rep. I mean… lines of 100 m long. No way that I would stand in a line that long. No no no. My flight is still on, we think. It was a very long wait and six hours later than planned, we were one of the few planes departing that day. I was so happy I bought myself a cheap upgrade during check in… best investment ever! The plane was bigger than normal and had flat beds in business… I fell asleep immediately. When I woke up an hour later, the plane was still in Brussels… I turned around, pulled my blanket up and closed my eyes again.

Being part of the advisory board was a great experience. It was the first time I met people with the same condition. I also understood I was one of the lucky ones with symptoms relatively under control. I learnt that my medicine was discovered by accident. It was produced to stimulate growth in children with growth disorders. The medicine looks like the growth hormones, so it was logical to believe that the more growth hormones “be like” were in the body, the more products would be made by the body to actually grow. Nope. It did the opposite. The growth was stopped. Our bodies prefer the medicine over the real stuff, and would no longer process the actual growth hormones. In effect that was exactly what was needed for people producing too much of growth hormone! It is also an atypical medicine not acting on the gland producing the excess hormones, but in the liver.

As usual when abroad I try to make the most out of it. With one evening lost to the snow storm, I only had one evening left to do some sight seeing. There goes my plan out of the window… no time to see the colorful facades of the Emporis building or Pau de Carabanchal, to take long exposure shots of the Puenta del Toledo, to look up at Terminal T4 II, to have a stroll through Parc de El Retiro… I picked out the Temple of Debod to have a closer look at.

Quite an enjoyable little escapade…


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