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What are the lives of adult people in Denmark diagnosed with spinal muscular atrophy type II like?
How do they live? Do they get an education, do they work? Do they have friends, a love life? Enough money?
What are their daily lives like, and what do they think about the future?
These were some of the many questions answered by almost 80 percent of the adult population with an SMA II diagnosis in Denmark in a comprehensive interview study carried out by RehabiliteringsCenter for Muskelsvind.
The aim of the study is to strengthen the rehabilitation effort for those living with the diagnosis today and to become better at counseling new families. Because in Denmark as abroad we still lack systematically accumulated knowledge about the life as an adult with SMA II.
Over the course of the next six months, the results of the study will be posted on this site theme by theme. All of those who took part in the interviews and all other stakeholders are invited to read along when the results are published. Comments to the statements and interpretations presented here are welcomed, as they will only serve to increase the utility value of the study.
In parallel with the publications of numbers and ratios, people with SMA II will put a human face on the many data. A series of personal portraits will complete the study and offer a more balanced picture of what life as an adult with SMA II is like.
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