Do blood transfusions have any complications?
Sometimes people can develop transfusion reactions, with symptoms such as fever andrash. Medication can be given before a transfusion to help prevent these symptoms. Red celltransfusions can also cause a buildup of extra iron in the body, which can harm the heart or liver,cause diabetes, slow down normal growth, and even cause death if the extra iron is not removed. The amount of iron in the body of a person with DBA must be checked regularly. If iron levels aretoo high, a doctor can recommend drugs to remove excess iron in body tissues. This process iscalled chelation therapy. People getting transfusions should avoid iron supplements.
What is bone marrow/stem cell transplantation?
Bone marrow/stem cell transplantation replaces a person’s bone marrow/stem cells with thosefrom a healthy, matching donor.
Are there other treatment options for DBA?
Other treatment options are being studied, but to date none work as well as corticosteroids ortransfusion therapy. One day, a safe, reliable cure, perhaps using gene therapy, might be possible.However, this is still many years away.
Who can I call with questions?
For answers to your immediate medical questions, you can call the DBA nurse, Ellen Muir, RN, MSN,at 1-877-DBA-NURSE (322-6877) or the nurse at one of the DBA national resource centers near you.For additional information and support, call the DBA Foundation at 716-674-2818.
Living with DBA
People with DBA can live long, healthy, activelives if they get good medical care and live ahealthy lifestyle. As long as their hemoglobinlevels are high enough (hemoglobin is thesubstance in the red blood cells that suppliesoxygen to all cells in the body), people withDBA can take part in all activities, usuallywithout limitations.Finding out that you or your child has DBAcan be scary and overwhelming. Here aresome tips to help you cope.
Contact the Diamond Blackfan AnemiaFoundation.
To get in touch with familiesin the support network, see the back of thisbrochure.
Enroll in the Diamond Blackfan AnemiaRegistry.
This is a patient registry dedicatedto collecting, analyzing, and sharinginformation on DBA. See the back of thisbrochure.
Join a support group.
A list of online DBA support groups isincluded on the back of this brochure.
Learn as much as you can about DBA.
If you don’t understand certain medicalterms and concepts, ask your doctor toexplain. Take notes, tape conversations,and ask questions during doctor visits.Use a notebook to organize your medicalinformation. Build a strong partnership withyour medical team.
Research on DBA and other relatedconditions might soon lead to bettertreatments, new cures, and improved qualityof life for people with DBA.
Talk with a mental health professional.
Psychologists, social workers, and counselorscan help you deal with the challenges of living with DBA or with someone in yourfamily who has DBA.