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Family Life

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 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 to 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.

Work

People with Fabry disease should consider an occupation that best suits their lifestyle. A career that requires a great deal of manual skill, rapid changes of temperature, physical exertion or stress should be avoided. As tiredness is a feature of Fabry disease, you should try to allow time for resting during the working day.

School

Children with Fabry disease may feel that they are different from their peers, and they may not be able to fully take part in physical activities. It is therefore useful to make teachers and school friends aware if your child has Fabry disease. FA has a new picture book ‘Faber the Dragon’ which tells in a ‘child friendly’ way what Fabry disease and how it affects them. Go to Store to view.

Family planning

Anyone who has Fabry disease and who wishes to start a family may have concerns about passing Fabry disease on to their children. 

The Fabry State Clinics are the best place to start and will be an important source of information and support about this and can advise you about pre- and post-natal tests that can be conducted. 

A genetic counsellor, if you have been referred to one, can be particularly helpful. They may complete a medical family history to assess the presence of Fabry disease within your family. In addition, they can explain the likelihood of your children having Fabry disease, based on your particular circumstances