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How long do I have to live?
This is most people’s first question, along with “what can I expect to happen.” The doctor’s answer is called a prognosis (an educated guess about the likely course of your disease and how long you might live). Because each person is unique, and each person’s disease is different, a prognosis can be difficult to make. Also, how a disease progresses over time is unpredictable, and less is known about rare diseases than common diseases.
We understand that coming to grips with serious health news is a major challenge. But once the initial shock of a bone marrow failure diagnosis wears off, the best thing you can do is learn as much as possible about your disease. Knowledge is power, and understanding what’s happening to your body will help you remain focused and hopeful.
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.
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.
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.
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.
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.
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.
AAMDSIF hosts Patient and Family Conferences around the United States each year. Conferences are free to attend and include presentations by the leading medical experts in rare blood cancers and bone marrow failure diseases. It is also an incredible and important opportunity for patients to connect with one another and share support, answers and hope.
