What is “living well” with bone marrow failure disease?

After your diagnosis

Much of the information offered by AA&MDSIF is centered on how you can become an informed and proactive patient to fight bone marrow failure disease. These are patients who make the right decisions and take the right steps that lead to receiving the best treatment and healthcare possible.

Another side to effective patient behavior

An equally important part of being a powerful and proactive patient is making the decision and then taking the steps to do everything you can to make your life as a patient the best it can be. People with bone marrow failure and other chronic diseases, despite certain limitations, are leading active and fulfilling lives. They have chosen to “live well” –living their lives to the fullest through special attention to their physical and emotional health.

What you do after your diagnosis beyond treatment-related activity can make a big difference in how successful you are in meeting this new challenge.

Living well in body, mind, and spirit

When a person becomes ill, all parts are affected – body, mind, and spirit. All are part of the whole, all are intrinsically related, and all need attention. Doctors and nurses do their best to fix the body, but the care of the mind and spirit are in the hands of the individual and their loved ones. This collaboration of treatment is necessary to enable a person to live a good life with physical illness, which millions are able to do every day.

How to approach living well

Taking care of your body, mind and spirit while living with bone marrow failure disease covers a lot of seemingly unrelated areas, but for an optimal "living well" experience you will want to pay attention to all of them. Some living well topics cover physical health and some cover emotional health, and each has an influence on the other. Deciding to approach "living well" is a choice that will require both planning and commitment similar to the way you are managing your healthcare and treatment. This is the best way to ensure you are making the best possible effort in managing your disease. If you’re Standing Up for Your Health and Living Well, you are on your way to being a truly powerful patient.

Living well by topic

In consultation with expert professionals, we have divided Living Well into six areas that you can follow:

  1. Fatigue
  2. Nutrition
  3. Exercise
  4. Emotional Health
  5. Sexuality and Intimacy
  6. Complementary and Alternative Therapies