Dear Laurie,
It was so good of you to return to Marrowforums to share your thoughts with us about treatment of AA patients at small, local hospitals.
You have hit an important issue right on the head. You're exactly right that that local doctors, hematologists, and hospitals often do not have current information about bone marrow failure diseases and may be reluctant to seek information from specialists around the country. Most doctors never see a patient with AA, or may see at most a couple of cases in an entire career. This places a tremendous burden on families and caregivers to find information when their loved one is stricken and then convince the local professionals to accept that information and act on it.
For several years, the
Aplastic Anemia & MDS International Foundation has tried to address this lack of understanding about bone marrow failure diseases among health care professionals by developing materials, programs, and services directed to this particular group. In coordination with the
Bone Marrow Failure Disease Consortium, the Foundation is charged with "[enhancing] the availability, accessibility, and quality of information offered to patients and health care professionals."
Laurie, you have valuable experience to share about your Dad's treatment. You may want to contact the AA&MDSIF to get their information packet for the health professionals in your community and talk with them about other ways we can work together to educate those who take care of us about these diseases.
Thank you for sharing your story. And, again, my condolences on the loss of your father.
Ruth