BlogMy life with Alpha-1

Augmentation therapy

I was lucky enough to have moved to Germany when i got my diagnosis of Alpha-1 Antitrypsin deficiency. Furthermore I was lucky enough to meet a specialist whom was a specialist in alpha-1 and whom put me on augmentation therapy. My first infusion i had in may 2012, I can hardly begin to explain at how many levels it has given me more and more of my life back.

Of course my life is very different from before, when I was a lot better with my lungs and my body than now. However the augmentation therapy that augment my alpha-1 antitrypsin levels from barely traceable to a fair level gives my lungs protection from the negative impact of infection and daily pollution in the air. For every bottle of plasma 300 blood donors have donated their blood. I can never thank all those people in person, but I sure am very grateful for their selfless donations that give me both a longer life and a better one.

Not all countries in the world give augmentation therapy, some claim it does not work others say it is too expensive. But how and why should one put such a burden on a person that is born with a genetic disorder? There is in the nordic countries very little diagnostic being done. I come from Norway myself and my motherland does not offer treatment to patients. The selfless and relentless work that is being done from the alpha-1 associations in this region is one that will ensure that the generations to come hopefully will have access to treatment. We see the same work being done in all countries where augmentation therapy is not available. A big thank you to all of you for what you do!

To be going to the specialist every week will never be fun, to do it for the rest of my life certainly will not be fun. I spend half a day at the surgery every single week. Despite the hassles of it I am so thankful to have access to such great care. This is something I hope every alpha-1 affected person will have in the future. This is why I do what I do, this is why I need to raise my voice and never let it be silenced.


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