Know Your Options

It's important to stay well-informed about your disease and treatment options. That's how you develop strong input with your health care team and help educate your family and friends. The knowledge will also contribute to making informed choices as you better understand your treatments and progress. 

When the time comes to make a decision about treatment, use reliable information, along with input from your healthcare providers, family, friends and others. Weigh the pros and cons of each treatment. Think about how well it might work, side effects and costs. Make sure you know what to expect once you start treatment. Consider how it might affect your lifestyle.

Then work with healthcare providers to develop a treatment plan you want and feel you can do. Remember:  You have the right to choose or refuse treatment.

In the months and years to come, you will want to keep track of how well your care plan is working. Note your symptoms and side effects. Review the plan with health care providers regularly to see if it can be improved.

When you visit your doctor, it is important to take a list of questions to ask your doctor about treatment. Use this list of questions [URL link to question list] to consider for your next doctor's visit.

Remember - always talk to your doctor before you stop any medicine. If side effects are tough to handle, your doctor may be able to prescribe a medicine to reduce them.

Other suggestions include:

  • Read our in-depth disease and treatment content about aplastic anemia, MDS and PNH
  • Request a patient information packet from AAMDSIF. You can order a free information packet on our website, or you can call us at (800) 747-2820.
  • Watch live and recorded classes in our Education section. Click HERE for more information. You'll find video presentations, interviews with medical experts and interactive learning modules.
  • Talk to the AAMDSIF patient educator. Call us at (800) 747-2820, option 1, or email us at help@aamds.org.
  • Attend our patient and family conferences. Click HERE for more information. They are great places to learn more about your disease. You can hear from leading medical experts, connect with other patients and pick up materials.
  • Visit the National Library of Medicine Web site where you'll find reliable and detailed information on bone marrow failure disease. They have a simple search tool on the main page also access MedLinePlus, a website for patients,families and friends maintained by the National Institutes of Health.
  • Tips for avoiding treatment mistakes. This includes simple things you can do make sure you get the right treatment at the right time.
  • Evaluating online information. This section includes practical advice to help you recognize the trustworthiness of the source.