Whilst your specialist team will help with treatment, there are some things that patients and carers can do themselves to help relieve the symptoms of Fabry disease.

Diet

Gastrointestinal discomfort may be reduced if you eat small, more frequent meals. As with anyone, a healthy diet can contribute to general wellbeing, and a diet that is low in salt can help reduce the risk of heart and kidney problems.

Environment

Pain related to Fabry disease can be triggered by things such as exposure to the sun, sudden changes in temperature, physical exertion or stress. Layering clothing will enable you to adapt to changes in temperature to help keep you more comfortable, whilst drinking plenty of water before and after exercise can help relieve pain related to physical exertion. As stress is a well-documented trigger for pain and other complications, avoiding stressful or emotional situations should be a priority. This may mean planning journeys and allowing time for relaxation and regular naps.

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. There is more about this in the family life section.

General Wellbeing

Illnesses can trigger pain and worsen symptoms, so regular visits to your doctor to monitor general health are an important part of overall management. As with anyone, it is advisable not to smoke or to drink alcohol in excess to help prevent damage to the heart and kidneys and reduce the risk of stroke.