7.5. Symptom Management: Quality of life


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The key thing for the symptom management and quality of life in Fabry Disease is to have the patients: 1)  report what problems they are having so that they can be addressed and 2)  lead a healthy active lifestyle and have realistic goals.  Some patients who have pain associated with Fabry Disease may refuse to be active unless they are completely pain free, which is going to be very difficult to achieve, and the side effects of the medications to achieve 100% freedom from any awareness of pain will probably not be a good idea. Pediatricians need to find a balance which allows for an active lifestyle but that doesn’t make the treatment more of a problem than the disease. Maintaining activities, maintaining social interaction is important and patients in a pediatric age range do struggle with these issues. One of the key things pediatricians can do is to make sure that the school and families are aware of some of these needs.  Patients with Fabry Disease should have immediate access to get up and go to the restroom when they need to, they should be allowed to drink water and maintain hydration even in class, and they should be allowed to opt out of participation in sports or gym class when they’re having pain.

 

 

 

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