Early diagnosis offers better treatment options
Lise lived with Alpha-1-Antitrypsin Deficiency for many years without knowing it. She was past 40 when a doctor's suspicions led to the simple but important blood test that revealed the diagnosis.
Back then, there was no medical treatment options to turn to, however, fortunately there are today. Lise is not a candidate for this treatment, as her lung capacity is too poor. Treatment is only offered to patients with a lung capacity between 35 and 70 percent of normal. And that does not apply to Lise.
With the new treatment options, it is more important than ever to make the correct diagnosis in time. This way Alpha-1 patients can receive the best treatment options possible, early in the process. Fortunately, Lise was able to have a valve operation, and this has raised her quality of life considerably. Before the surgery, she could only walk a few meters. But now, she can take longer walks and join in on activities with her grandchildren.
In this episode of A1R TIME, Lise talks about what it is like to be refused the treatment you desperately need. And also, what it feels like to regain some of her lost energy at the age of 72.
A1R TIME is initiated by CSL Behring. Our goal is to spread awareness about Alpha-1 Antitrypsin Deficiency and to create a community for all affected by the diagnosis. Want to share your story? Send us an email: firstname.lastname@example.org
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.
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.
The long road to diagnosis
Gunhild Nørhave 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.