I got the diagnose, when I was 14 years old, the doctors did not know XLH at the time. I was a relief to get a diagnose. I have a good life in spite of the disease. There are many things I can not do or many things there are difficult to do, but you find a way to do things in your own way. I am committee member in XLH patientforeningen Danmark, it is only 3 years old union and there is still a lot to learn and to do.