We help you cope with your battle against bone marrow failure disease. The information we provide teaches patients and families how to be proactive members of your health care team. Patients just like you have also learned how to develop their inner strength by connecting with our community and taking advantage of our resources.
Caring for your whole self
Another side to effective patient behavior
The key to becoming an empowered patient is simply deciding to make your life 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 take care of themselves - 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.
Caring for your 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 take care of yourself
Taking care of your body, mind and spirit while living with bone marrow failure disease covers a lot of seemingly unrelated areas. To ensure the quality of everyday living, you will want to pay attention to all of them. Some topics cover physical health and some cover emotional health, and each has an influence on the other. Deciding to improve the quality of your everyday life takes planning and commitment, similar to the way you want to manage your healthcare and treatment. If you are both controlling your care and taking care of yourself, you are on your way to being an empowered patient.
Six Areas of Care
Everyone who regularly exercises reaps the advantage of a more efficient metabolism, which effectively improves both body and mind. No one can afford to get physically rusty, but when your body is already fighting disease, it needs to muster all the strength it can. This section will help you understand why and how you should address your physical needs, but always consult with your doctor first before embarking on any exercise routine.
Ongoing fatigue is a major issue in the lives of most bone marrow failure patients. A variety of factors contribute to this condition, and it's important for patients to recognize that it should be reported to their doctors and not overlooked as an ordinary side effect. Learn more about fatigue and what you can do about it.
Whether you think you already eat healthy or not, now is the time to get serious about proper nutrition. Patients have the ability to contribute to their overall health - as well as optimize the production of new blood cells by their bone marrow - when they eliminate unhealthy or overly-rich food and drink and follow a diet recommended by their doctor. Food handling and preparation are just as important, so those tips are also included in this section.
No one is prepared for the shock of learning they have a serious disease. But in the aftermath of diagnosis, patients can and do learn how to adjust to their condition. With helpful AAMDSIF resources, they can learn about their illness, build their own support system and connect with their peers. But before that happens, patients have to deal with a range of powerful emotions.
Your body is fatigued from fighting a disease; you may be taking strong medication; your outlook on life has changed. For most people, it's natural for sex to take a backseat in these circumstances. Nevertheless, intimacy is a quality-of-life issue that patients can and should discuss with their doctors if it becomes a problem. It's wise for patients to be gentle with themselves and remember that there are many ways to express intimacy.
Some patients want to explore treatment options that are outside of the traditional medical profession. This section explains the types of products, practices and theories that are considered complementary and alternative therapies.
