Table 2.

The coding tree

Categories	Subcategories
Frustration and anxiety with progression of symptoms without being diagnosed	Had not felt any physical abnormality in their teens Were recommended to consult doctors by their friends and parents Had obsessed with anxiety about the unknown disease and progression of their symptoms
Confusion about diagnosis with an unfamiliar disease	Got upset when they heard the diagnosis was a genetic and intractable disease Calmly understood the situation afterwards Did not check because there was fear about knowing Were not able to obtain sufficient information about the disease on the Internet and were not satisfied with the information
Emotional distress caused by a genetic disease	Tended to avoid contacting their brothers and sisters, who did not have the same symptoms Confessing to their supervisors about contracting the disease to account for their absences to consult doctors Concerns for marriage and childbirth
Passive attitude toward life, being extra careful	Dealt with things while embracing the anxiety Had experienced troubles in life that others could not know
Taking charge of life, becoming active and engaged	Were willing to communicate with other patients with the same disease Recognized that life was not only for oneself
Requests for healthcare	Specialized doctors and hospitals should be increased medical financial supports must be provided Expected enactment of laws allowing euthanasia