Newly Diagnosed | Aplastic Anemia and MDS International Foundation

Newly Diagnosed

The effect of a new diagnosis

newly diagnosed patients

A new diagnosis of bone marrow failure disease raises many questions and concerns for patients and their loved ones. You may feel confused and overwhelmed by all the new terms and information being heard for the first time. There is so much to learn and do – how can you even know even where to begin?

Here are five important points for newly diagnosed patients to remember:

  1. Help is here. AA&MDSIF and many other parties are here to help, with information and resources to assist newly diagnosed patients and families cope with new and unfamiliar circumstances. Remember that a large and seemingly insurmountable challenge can be more easily met when it is broken down into logical component parts. With this in mind a good first step for newly diagnosed patients is to become familiar with the AA&MDSIF Standing Up for Your Health program, which is built on five pillars of support that help you become an informed, capable and powerful patient.
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    • Focus on building relationships for best professional and personal support. The new circumstances faced by newly diagnosed patients are best met by having good communication and cooperative relationships with the people who can and want to help to you. Whether it’s about support and assistance in your personal life and affairs, or about the medical and clinical treatment you receive, newly-diagnosed patients help themselves by making the most of their personal interaction with others.
    • Start the learning and self-education process as soon as possible. The more the newly-diagnosed patient knows about their disease, prognosis, and treatment options the better they can cope and make informed decisions about their health circumstances. You won’t be able to learn everything at once. Learning will is a process. The information and tools you need to get started are available through AA&MDSIF and other resources. From activity and progress in the research related to bone marrow failure disease all the way through living well with the disease, a newly diagnosed patient can focus on their areas of interest.
    • Don’t immediately believe all the information you may encounter. The newly-diagnosed patient may be inclined to accept everything they read or see online and hear, which can cause concern or even panic. Patients need to be aware that some information may not apply to them, may be outdated, or even misleading or incorrect as presented. Learn how to evaluate information found online.
    • Others have battled this diagnosis successfully – you can too. The last point for newly diagnosed patients to remember is that others came before you (even in a time where there was less information and fewer options) and only allowed themselves to feel helpless and hopeless for a very short time before they started to work on their plan to manage their diagnosis and disease with every tool available to them.