Åsa Edman suffers from alpha-1 antitrypsid deficiency.
A genetic, very unusual protein deficiency that contributed to her contracting carbon.
The disease has major consequences in everyday life:
- The humidity outside is too high, so I haven't been outside for over a month, she says.
A little research on the medicine
There is a brake medicine that slows down the breakdown of the lungs, but in Sweden there has been little research on the medicine, which has contributed to the doctors in Västra Götaland not prescribing it.
Even in the rest of Sweden, printing it is restrictive.
In several EU countries, the medicine is covered by the high-cost protection, but this is not the case in Sweden.
Today, an annual treatment costs between SEK 500,000 and 1,000,000, which also contributes to the fact that few doctors want to prescribe it.
Denmark influences Sweden's attitude to the drug
Just a few years ago, Denmark changed so that the medicine now falls under the high-cost protection.
Eeva Piitulainen, docent in pulmonary medicine, has researched Åsa's protein deficiency and she believes that Denmark's view of medicine affects how Sweden views it.
- The attitude towards the medicine has started to soften a little after the changes in Denmark, so it is possible that more people will be able to get the brake medicine in the future, she says.
In the clip above, you can accompany Åsa home - which she hasn't left in a month.