Author
Marion Wilkens, Alpha1 Germany eV, as published in Alpha1 Journal 1/2017.
Dear readers, Alphas and family members,
Do you also love doing puzzles? Do you also puzzle until your eyes close at night? What makes puzzles so exciting? Is it the puzzle itself or the joy of seeing the finished picture?
We chose "Alpha1 – Our Puzzle" as the theme for 2017 because more and more pieces are falling into place when we look at Alpha-1 deficiency. It's not always the lungs that are affected; often it's the liver, sometimes even both. The deficiency impacts our heart, which has to work much harder. Our mental health is also affected, and sometimes that of our loved ones as well. Do people with Alpha-1 deficiency suffer more from bronchiectasis or a hyperactive bronchial system? What about the skin, what about the muscles – are they all functioning "normally"?
Looking at our "Alpha 1 puzzle," I see that we've only just created a framework; many pieces don't yet fit into our picture. Many more pieces are lined up next to each puzzle piece. We make a little progress each time, but every now and then we turn a piece over in our hands for hours until we figure out where it belongs.
Have you ever done a jigsaw puzzle with several friends? Everyone has a different technique, a different perspective, and you make much faster progress than alone.
This is how we see our work within the association: Many different people (doctors, patients, members, relatives, and supporters of Alpha 1 Germany) are piecing together the puzzle to complete the picture of "alpha-1 antitrypsin deficiency." It takes patience and optimism so that the puzzle can ultimately be completed and we can be satisfied.
It's a long road ahead, one we'd like to travel with all of you who also believe that the picture can one day be completed…
Yours sincerely, Marion Wilkens
