Author
Marion Wilkens, as appeared in Alpha1 Journal 2/2023.
Beyond our political efforts to shorten the time to diagnosis, we are also actively committed to dialogue with people affected by COPD. We consider it particularly important to inform COPD patients that the causes of their disease are not solely due to smoking, but that genetic factors can also play a role. Tests for alpha-1 antitrypsin deficiency in COPD are usually rare – the number of undiagnosed cases is therefore all the higher.
We estimate that around 20,000 people in Germany suffer from severe alpha-1 deficiency, but most currently only live with a diagnosis of COPD. How did we arrive at this high number?
Assuming that approximately 6.8 million people in Germany suffer from COPD, and according to our assumption...
If there are 10 carriers of the % Alpha-1 deficiency, that would already correspond to 680,000 people. Even though most are fortunately only genetic carriers, a few with severe deficiency are hidden among them. Identifying this relatively small group is of enormous importance to us.
To raise awareness, Grifols has chosen a new format: a live Facebook webinar entitled: „COPD: Smoke-induced or congenital? Your questions in the expert live chat“.
The event took place on November 30, 2023, at 6:00 PM. The webinar focused on COPD and AATD, addressing both the physical and emotional burdens, as chronic obstructive pulmonary disease and its genetic variant, the often-unknown alpha-1 antitrypsin deficiency (AATD), present daily challenges for all those affected. Symptoms such as shortness of breath, persistent cough, and phlegm production are constant companions.
November is COPD and Alpha-1 Awareness Month, a good occasion for such a webinar. In this live Q&A session, patients were able to ask their questions about the disease live in the chat to senior physician and expert Alexander Jerosch, under my moderation.
