“Myelo”- what? I have “plastic anemia”? “Parox-something” -- I can’t remember what the doctor called it!"
Bone marrow failure diseases can be difficult to pronounce. But a diagnosis of aplastic anemia, myelodysplastic syndromes (MDS) or paroxysmal nocturnal hemoglobinuria (PNH) can also be scary and confusing at any age!
Whether you or a loved one are newly diagnosed with a bone marrow failure disease, deciding on your best treatment option, or trying to find ways to live well with these chronic diseases, AA&MDSIF has something for you!
AA&MDSIF has Answers. Some are written in plain language on our Web site, or in our patient guides. From Blood and Bone Marrow Basics to disease-specific presentations by leading bone marrow failure disease experts, our Online Learning Center includes numerous topics on research, treatment options, and living well with aplastic anemia, MDS, or PNH.
- For our regional patient conferences, we travel around the country to bring medical experts to you, where you can have your questions answered and meet other patients and familes who are just like you.
- Dr. David Margolis explains bone marrow failure to kids -- and even some adults -- in the Bone Marrow Garden.
- Our Research Reviews and Research Summaries for patients help you find and understand the latest advances in the diagnosis or treatment of your disease.
- We are leading the effort for more answers through the first privately-funded MDS Clinical Research Consortium in the United States. The Consortium is sponsored by AA&MDSIF and supported by the Edward P. Evans Foundation.
AA&MDSIF Provides Support. Because bone marrow failure diseases are very rare, it is often difficult to get in touch with others who are dealing with issues similar to your own.
- Have you talked to Leigh Clark, our patient educator, or connected with a volunteer patient or caregiver through our Peer Support Network?
- Have you met with others patients and family members through any of our 16 Communities of Hope support groups around the country? Find support through the method that works best for you.
There is Hope. Throughout your journey with bone marrow failure diseases, AA&MDSIF offers Hope. Hope through education. Hope through research to understand bone marrow failure diseases, and find cures and better treatments. Hope through your own stories and experiences with bone marrow failure diseases. This month, read about Ashley Oakes, diagnosed with severe aplastic anemia while pregnant.
Our programs and services are designed for patients, families, and caregivers to receive answers and information, meet others, share experiences, and find hope. Let us help you on your journey. We'll be with you every step of the way.