Bounced between different hospitals
It has been three years since the treatment for Alpha-1-Antitrypsin Deficiency was approved in Denmark, and the patient association Alfa-1 Denmark estimates that around 115 - 120 Danes are under treatment for Alpha-1-Antitrypsin Deficiency across the country.
But the road to treatment is not always easy. In this episode of A1R TIME you get to meet Dannie, who is suffering from Alfa-1-Antitrypsin Deficiency.
It has been nine months since he saw his doctor to be assessed for treatment. Even though he meets all the criteria, he still doesn't know when he can start receiving the weekly infusions that will help prevent the symptoms of his disease getting worse.
He feels as though he has to fight to receive treatment, even though he should have an equal right to treatment in Denmark. To him, the support from his family has been crucial to keep fighting while the disease has worsened.
When Dannie moved to another region, he experiences differences in the regions approach to his illness - despite the fact that it should be the same across the country.
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: info@cslbehring.com
More episodes
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 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.