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Remissions have occurred in approximately 17% of DBA patients reported
to the DBAR. Remissions occur following both steroid and/or transfusion
therapies. DBA patients who are in remission are able to maintain
acceptable hemoglobins without steroids and/or transfusions.
In most instances, there is only one DBA patient in the family. In
these cases, DBA may or may not be genetic. In approximately ten percent
of cases, there is more than one affected family member. For example,
there could be more than one affected sibling or both a parent and
a child affected. Where there is more than one family member affected,
DBA is genetic in that family. To date, one DBA gene, RPS19(19q13),
has been identified. Approximately twenty-five percent of DBA patients
are believed to have this gene. Scientists in the United States and
Europe are currently looking at three other chromosomes which likely
have other DBA genes.
1. Contact the Diamond Blackfan Anemia Foundation, Inc. (address provided
below) who can put you into contact with families in the support network.
2. Register with the Diamond Blackfan Anemia Registry (address provided
below).
3. Take notes, tape conversations, and ask questions when talking
with your doctor(s) and other sources.
4. Learn definitions of medical terms (see Glossary) so you can understand
medical terminology.
5. Research DBA at a medical library or on a Medline service on the
Internet.
6. Join a DBA support group (online or in your geographical area).
DBA is not a form of cancer. However, a small number of DBA patients
have developed leukemia or cancers. This rate appears to be at a substantially
higher rate than the background rate. Of the 355 patients in the DBAR,
ten have cancer. The cancers involved are osteosarcoma (4), MDS (2),
colon carcinoma (2), and soft tissue sarcoma (1), and melanoma (1).
There have been 23 cases of cancer reported in the literature some
of which are also included in the DBAR study; the most common of the
cancers reported in the literature are acute non-lymphocytic leukemia
(ANNL), myelodysplasia (MDS), and osteogenic sarcoma.
In what activities can a DBA patient engage?
Depending on the patient's medical condition and his/her doctor's
advice, most patients are encouraged and able to get some form of
physical exercise every day. Normal physical activity is generally
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