Many of the symptoms of Fabry disease appear throughout an individual's life and are sometimes unnoticed or dismissed when they first appear.  It can be very difficult to recall:  when symptoms first appeared, their frequency, their duration and intensity, their progression over time, their cessation, etc.  It is also difficult to recall the dates of each medical evaluation, laboratory test, and medical procedure an individual receives.

 

The NFDF is eager to provide tools to individuals with Fabry disease and their families to help manage their disease.  Participatory management by individuals and their healthcare providers is very important to ensure the best care possible.

 

Individuals with Fabry disease should be active participants in their healthcare to ensure they receive timely evaluation and follow up of disease symptom occurrence and progression, timely receipt of the minimum recommended clinical assessments, and appropriate treatment in time to avoid a diminished quality of life or the life-threatening complications of the disease.

1.  A symptoms checklist for use by healthcare providers, educators, and individuals with Fabry disease and their families

 

2.  A paper clinical assessments journal for tracking accomplishment of the minimum recommended clinical assessments 

 

3. We are in the process of building an online clinical assessments tracking tool with automatic notification when an assessment due date is near completion.

 

4.  The recommended assessments guide designated by the Fabry Registry Board for individuals to use themselves and to share with their physicians who are unfamiliar with the recommended assessments.

 

5.  Information on staying healthy for individuals with Fabry disease to consider with their physician's guidance.

 

Please provide suggestions for other tools or assistance the NFDF may be able to provide at Suggestions@TheNFDF.org.