Maintaining the best quality of life despite Paramyloidosis
  • Manter a melhor qualidade de vida apesar da Paramiloidose
Once Paramyloidosis is developed, people will have to take a new approach to everyday life, which will help reduce the impact of the disease and maintain a certain quality of life.
•Adapt your working conditions (part time, work from home, changes in the workplace, etc.) can contribute to maintaining an active and rewarding work life.
• Inform your close family members about Paramyloidosis to help them understand your situation. Maintaining the best quality of life despite Paramyloidosis, do not hesitate to speak with your relatives as they may feel helpless and distressed, especially since it is a genetic disease that can affect the whole family. Some may suffer more than others, but all are involved. It is often helpful to take a unit approach despite the illness: your close family members are at your side against the disease.
• Develop your social network as much as possible: ask your friends to join you in their leisure time or in everyday activities. If they want to help you, they better get things done with you.
• Whenever you need it, health professionals can give you support: psychologists, nutritionists, etc. Genetic counseling services are important not only in supporting people with Paramyloidosis, but also to family and potential carriers.
• You can also contact other people affected by Paramyloidosis through patient associations: exchanging life experiences can help you feel less lonely.
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