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pure red cell aplasia (PRCA)

How long do I have to live?

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. 

Sexuality and Intimacy

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.   

Emotional Health

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.  

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