I believe that a story is the shortest distance between two people. While this is my story, it is not just mine, and I did not do any of this alone. In April 1983, my husband Joe and I were 25 years old and attending to the required pre-marital blood work. Next thing we knew, we were sitting in a doctor’s office because my blood counts were abnormally low. They told us there was something wrong, but they didn’t know what it was.
Today, limited appointment times, overwhelming and confusing volumes of information available on the Internet, coupled with the stress of having a rare disease diagnosis, might mean patients don't always get the answers they need to make informed decisions about their care. Clear communication can have a positive impact on patient satisfaction, treatment adherence, and self-management. Improving communication in any relationship is helped by respect for each other and the ability to manage expectations.
We presented information from our last treatment adherence study in a poster at the 2014 American Society of Hematology meeting. The study compared patient and doctor/nurse perspectives on treatment adherence or continuation, including reasons that patients prematurely ended their treatment.
Innovations in the diagnosis, risk stratification, and treatment of myelodysplastic syndromes (MDS) provide hope for patients while creating challenges for their health care providers. Nurses play an integral role in providing patients with clear explanations, setting treatment expectations, and empowering them to be actively in their care decisions.
To a patient with bone marrow failure bone marrow failure: A condition that occurs when the bone marrow stops making enough healthy blood cells.
The Aplastic Anemia Aplastic Anemia: (ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, whit