Taking Care

Your well-being is important

Living with Fabry disease affects each person individually. But as with other serious, chronic illnesses, many people who have Fabry disease say that the biggest challenges are often social and psychological, rather than just physical.

Taking care of yourself means more than just getting good medical care. It also means making your own well-being a priority. Experiment with different approaches to find the ways of reducing stress, communicating about the impact of Fabry disease, and managing your time and energy that work best for you.

Communicating about symptoms

People who don’t understand Fabry disease symptoms sometimes make incorrect assumptions. Even close friends and family members may occasionally say or do something that shows they have little understanding of what it is like to live with Fabry disease.

How you deal with these misunderstandings are choices you will need to make. Some people with Fabry disease derive great satisfaction from becoming public advocates for greater understanding about Fabry disease. Others take an almost opposite approach, preferring that only close family members know that they have Fabry disease.

More on talking about Fabry disease »

Reducing stress

With a disease like Fabry, stress can come from all directions: for example from pain, fatigue, or from people who just don’t understand. Much of this stress is beyond your control; but how you respond to it can change the way it affects you.

Within limits, stress is normal and can be healthy. But too much stress can undermine your health and quality of life. Fortunately, there are proven ways to reduce it. Here are some suggestions to consider, but we encourage you to talk to your doctor and focus on those that work for you:

  • Exercise. It is important to find the type of exercise that both uses your strengths and accommodates your limitations. You can develop your own modifications to the kind of exercise you prefer.
  • Nutrition. Good nutrition can improve your sense of well-being. You may want to talk to a nutritionist to find a plan that works for you.
  • Enjoying life. Living with Fabry disease can sometimes feel like a full-time job. When stress is at its worst, it’s important to your health to find time for something that you really enjoy doing.

Living with pain and fatigue 

Many people with Fabry disease find that managing the pain and fatigue associated with the disease requires them to lead a more organized lifestyle. It might mean avoiding certain activities, being prepared for changing weather conditions, increasing water or liquid consumption, “budgeting” energy, or taking frequent naps. Medications may also provide relief.  Talking with your doctor is a good place to start.

Strategies that help to conserve energy and pace effort may also be useful. These could include:

  • Prioritizing. Figure out what’s most important and concentrate on that first. You can get to the other items on your list later.
  • Working smarter. Even brief plans and lists will help. Analyze your tasks to figure out the easiest ways of getting them done. Divide large tasks down into manageable bits.
  • Asking for help. Your friends and family may welcome the opportunity to help when you explain what they can do in specific situations.
  • Remembering your own value. Even if you are motivated more by concern for your family or others than for yourself, you can’t be at your best for them unless you take good care of yourself.