In the lonely corner?

In the lonely corner

In the lonely corner

Hey there,

Wow what a start we got on this week! On our trip back from Washington I upgraded us to “Plus” seating and we got very good seats! Great meal and a very good trip back home to Finland. But I have to admit that my medication is not only a good friend of mine :/

Just before leaving Finland and our trip to the HAE conference in Washington I got a letter from the Finnish KELA. That is the governments office where they give us yes or no for medication and they handle even the setting of how much you have to pay every year for the treatment you need. The letter simply claimed that from june 1st there are new rules, the yes we´ve had for this type of treatment is no longer a yes. You have to get a new confirmation on using HAE medicin.

The thing is that my regular medicine Danatrol (Danazol) 200 mg a day gets straight to my “ups and downs”. The stability I need (as we all do) in our daily life with this medication is an insecure journey every time I wake up. As most of you know, I am a pretty happy guy, but this medication is freaking me out! I loose my temper and snap very easily, just out of nothing!! But at the same time it keeps my HAE attacks away! This is the only medication we have, if KELA turn us down now using Firazyr or Berinert, the “shots” that I have been using and who is the only emergency medication we have in a severe attack!

So being pushed into insecurity now with this type of “office thinking” it gave me a three days in bed reaction! The medication is VERY EXPENSIVE so I understand that they need to look into it, but it is the only key to a normal life for us who have HAE. Even my Doctor think that this is a strange way of handling it, we need to apply every three year IF we get a yes. And this is a lifetime disease! There is no cure! I still haven’t got any response from KELA. So now I am using medication to stay calm, and try to avoid the attacks at the same time, so I walk around here like a Zombie and that is NOT the way I’m gone do this!

I am pushed into “the lonely corner” by using this medication, no one needs a volcano at home! I try to avoid any kind of situation that makes me freak out, but what kind of life is that? I admire the people we met in the US who actually have this type of problems around the world every day! They don’t have access to HAE treatment in the way we do, a lot of places there a no treatment at all, and there is no “KELA” to turn to! I really hope that there will come a better way of living for all of us!! No matter what kind of illness we might have. And most of all, a better understanding for rare diseases so no one will be forced into “the lonely corner”!

I wish you all a GREAT WEEKEND!

 

Lots of LOVE

Geir


3 responses to “In the lonely corner?

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  • Charles Picavet

    Terrible, Geir, they are morons. We have reimbursement issues here in the Netherlands as well, but as yet, the pharmaceutical company is good to us. I hope they come to their senses at KELA.

    Liked by 1 person

    • Geir Rönning

      Yes Charles, they are in many ways! I just wonder what kind of doctors they consult?!? They can’t know much about what HAE in combination with a stressful “don’t know situation” leads to 😉 I guess we just have to keep up the fight!!

      Liked by 1 person

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