| Fatigue |
Having a moderate to severe impact on patients’ HRQoL and daily activities, including their ability to get out of bed in the morning, to do their job properly, and to interact with their families. The frequency of these bouts of fatigue varied from 3-4 times per month to at least once per day |
8 |
| Acroparesthesia |
A painful sensation ranging from a mild hot or tingling sensation to a severely painful burning sensation. This pain was usually experienced in the hands and/or feet and worsened in hot weather. When severe, it can be very debilitating, affecting patients’ ability to perform day-to-day activities. At its mildest, pain was experienced infrequently (at least once per week); at its worst, it caused pain daily |
8 |
Gastrointestinal
problems |
Stomach cramps and diarrhea that severely limited patients’ daily activities and their ability to plan ahead |
7 |
| Angiokeratoma |
Red/dark spots covering various areas of the body including the lower stomach, legs, and back. Highly embarrassing and negatively affecting self-confidence and social activities |
7 |
Anhidrosis (lack of
sweating) |
Patients who experienced this symptom indicated that it was constantly an issue for them, and it was exacerbated by hot weather or exercise |
6 |