We provide resources, education and information to people affected by Alpha-1. Through our medical networks and collaborations, we can offer support to newly diagnosed and for them seeking basic information and help such as requests for literature etc.
Contact information: info@cslbehring.se
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Alpha-1 Antitrypsin Deficiency
A conversation about life with Alpha-1 Antitrypsin Deficiency
A1R TIME is initiated by CSL Behring to spread awareness about the serious genetic condition Alpha-1 Antitrypsin Deficiency. The condition is mainly affecting the lungs, often giving rise to chronic obstructive pulmonary disease, with a major impact on human life. Under the name A1R TIME we will publish podcasts and videocasts were you´ll meet patients and experts sharing experiences and insights about the disease, about treatment options and current research. Our goal is to create a community for all affected by Alpha-1.
Want to share your story? Send us an email: info@cslbehring.com
Karen’s husband Torbjørn on what finally being diagnosed meant.Listen to the newest episode of A1R time here>>
Videocasts
When should you test for Alpha-1 Antitrypsin Deficiency?
Episode 3 of 3 with Dr Møller. Have you tested your COPD and asthma patients for Alpha-1 Antitrypsin Deficiency?
Many patients are diagnosed with asthma or COPD when some of them in reality suffer from Alpha-1 Antitrypsin Deficiency. This is why Helene Møller Frost encourages general practitioners to take a blood test for Alpha-1 Antitrypsin Deficiency on patients with asthma or COPD.
The physically active non-smoker can also have an Alpha-1 Antitrypsin Deficiency
Episode 2 of 3 with Dr Møller. Even specialists overlook clear signs of Alpha-1 Antitrypsin Deficiency and neglect to take the important blood test that can lead to the diagnosis. This is what Doctor Helene Møller Frost talks about in this edition of A1R TIME.
Suffer from Alpha-1 or are you asymptomatic?
Episode 1 of 3 with Dr Møller. What is the difference between suffering from Alpha-1 Antitrypsin Deficiency and being an asymptomatic carrier of the disease? Doctor Helene Møller Frost explains.
Podcasts
Karen from Norway went to Germany and was given 10 extra years
Where you live can determine whether you can receive treatment for Alpha-1 Antitrypsin Deficiency or not. When Torbjørn and Karen met, doctors in Norway had told her she only had one more year to live. Without even having a diagnosis for her. When she moved to live with Torbjørn in Germany, she was diagnosed with Alpha-1 Antitrypsin Deficiency and given the opportunity to receive treatment for the disease.
Bounced between different hospitals
It has been three years since the Alpha-1-Antitrypsin Deficiency treatment was approved in Denmark. But even if you meet all the criteria for being eligible for treatment, being approved for the treatment can still be difficult, according to Dannie who has first hand experience of the reluctance in the system.
Early diagnosis offers better treatment options
Lise lived without a correct diagnosis for years and was past 40 before she was diagnosed with Alpha-1-Antitrypsin Deficiency. Today she has become too ill for medical treatment, but has fortunately benefited from a valve operation.
The long road to diagnosis
Gunhil knew that something was not right. She was 18 years old and short of breath. When it was at its worst, her lung capacity was down to 20 percent.
The complete fascination of a protein
Eeva Piitulainen has been fascinated by Alpha-1 Antitrypsin Deficiency and found it remarkable that no pulmonologist was conducting research on the subject.