Talking with Teachers

As always, we encourage you to discuss any questions you may have about talking with others with your physician. Children who have Fabry disease may not understand why they are experiencing certain symptoms and why they may find it difficult to engage in certain activities. They may also miss a lot of school due to illness, and may feel isolated from friends.

Helping teachers to support your child

If your child's problems involve school experiences, you may want to consider speaking with his or her teachers or caregivers or have your physician speak to them. Since Fabry disease is a relatively rare disease, many teachers may not know about it.  This website offers educational materials that may help.

When your child needs emotional support

If your child has Fabry disease and is having difficulty coping emotionally, you may want to speak to his or her doctor about the kinds of support available.

How a genetic counselor can help

Talking Points

Explaining a complex disorder like Fabry disease is not always easy. Below you will find some potential talking points to assist you in communicating the impact that Fabry disease may be having on your child:

  • Fabry disease is a genetic condition
  • Fabry disease is not contagious
  • He/She may have sudden episodes of intense pain (usually in the hands and feet)
  • He/She may have frequent episodes of fatigue
  • Weather changes and/or physical activity may bring on fevers or pain episodes