Frank Willersinn Living with Alpha-1 Antitrypsin Deficiency (AATD)  

Frank is a paid consultant for Takeda.  

Alpha 1 is a genetic condition which is not known, and that's a real problem.  

My name is Frank Willersinn. I am living in Brussels.  

I was a heavy smoker. I smoked up to 25 cigarettes a day for 10 years. And so it was quite normal sometimes to cough or things like that.  

Unfortunately, in my life, at the age of 43, I lost my left arm by a microbe infection, and that was – of course – that was an important moment in my life.  

My wife, she is a doctor, she said we should check your blood values.And so the blood went out to the laboratory and they gave a phone call saying, oh, we don't have alpha globulins in the blood you have sent us. Can you do it a second time? So she took blood a second time, and also the second time, there was no alpha globulins. Because I'm Alpha-1.I have the worst mutation in Alpha-1 we know today.  

I am an Alpha-1 with ZZ genetic condition, so I am lung-affected. I have emphysema.  

I had no problems my whole life up to the 50s.I got the first meeting with the genetician, and I asked his advice about Alpha-1. And he said, “Oh you know, that's not really a problem. You don't have to worry, to care about that.” And I was very surprised to hear this kind of advice.  

So I went to a second genetician and to a third one in Belgium and in Germany. They said, “Well don't worry. There are a lot of Alphas out there, and if you have no symptoms, you don't have to care about it.” So that was not enough for me because I really want to know what is going on.  

A friend of mine, he was a lung doctor and he said, “Frank, we should get on treatment.” And I'm very grateful because as you can see, I don't need oxygen. I feel fine. I travel. 
 
Alpha-1 is a systemic disease. It's the whole body. And so of course on the patient side, we have to bring the doctors together, but also social workers or psychologists. They don't know really what is going on in Alpha-1, and we the patient, we have to take the flag to tell them what is going on.  

There is one reason why we do all this work in advocacy, and for me the reason is we are going for the next generation and it's a pleasure to work also for advocacy in Alpha-1.  

Individual experiences may vary. The information in this video is for disease awareness only and is not medical advice. 
 
Always consult a health care professional for medical advice, diagnosis or treatment.  

Alpha-1 globulins are a group of proteins found in the blood.  

People with the protease inhibitor (Pi)*ZZ genotype have the most severe form of AATD and the highest likelihood of pulmonary emphysema.  

Ten years after receiving an AATD diagnosis, Frank met with a geneticist.  

Frank has been on augmentation therapy for 17 years and continues to monitor his liver health.
  
AATD—also called Alpha-1—can affect each person differently.  

We hope Frank’s story inspires others to share their experience with AATD.  

Talk with a health care professional if you have questions about your own liver or lung health. 

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