Explaining Fabry disease
Sharing information can help family, friends and work or school colleagues to understand Fabry disease and how it affects someone who has the disease.
Family and friends
Fabry disease is hereditary and so it is important to inform other relatives when there is a diagnosis of previously unknown Fabry disease within a family. These
relatives then have the choice of whether to go and see their doctor for a referral to a specialist and, if needed, to undergo testing to confirm whether they too have Fabry disease. This can be a delicate subject, so it may be worth discussing this with your healthcare team or counsellor before you approach other family members. Informing relatives and friends about Fabry disease can help them appreciate the needs and treatment of a patient and they can become a useful source of support. Examples of people’s experiences of Fabry disease can be found in the personal stories section.
School
Children with Fabry disease can feel different to their friends and classmates, either because of the symptoms they are experiencing or because they aren’t able to fully take part in all school activities, for instance sports. Also, they may have to take days off school for hospital visits. If you are the parent or guardian of a child with Fabry disease, explaining the symptoms to your child’s teachers will be useful. This should include an explanation of the symptoms, and how physical activities should be monitored to ensure the child is comfortable. In addition, your child may have to take medication during the school day and they may need to be excused from school regularly for hospital appointments and treatment.
Work
You may wish to consider informing your work colleagues if you have Fabry disease, as this will help them to understand the extent of your physical capabilities and that regular absences may be necessary for hospital appointments and treatment.