Information for Families
This section of our website has tips and information about DBA for people affected by the disorder. Finding out that you or your child has DBA can be scary and overwhelming. Here are some tips to help you along this journey:
Be Your Own Advocate
Since many doctors are not familiar with DBA it is very important for you to take an active role in managing your own, or your child’s, care. To make important decisions you need to know about DBA, understand the treatment options, and then make the best possible choices for your health or the health of your child. If you don’t understand any of the medical terms and concepts, ask your doctor to explain. Take notes, tape conversations, and ask questions during doctor visits.
- DBA Newsletters are available for families and supporters to increase awareness. Both the Daniella Maria Arturi Foundation DMAF and the Diamond Blackfan Anemia Foundation DBAF produce annual newsletters to provide the DBA Community with information on the latest DBA research, news and events. For more information or to download current issues, please go to www.dmaf.org for the DMA4DBA Newsletter and www.dbafoundation.org for the DBA Newsletter.
Find Good Medical Care
For answers to your immediate medical questions, you can call the DBA nurse at 1-877-DBA-NURSE (1-877-322-6877).
Since DBA is a very rare and complex disorder, it is important to find doctors and nurses who know a lot about it. One place to start the search is the DBA National Resource Centers. Even if you do not live near one of the centers, you may be able to be evaluated there. You and your doctor may choose to talk with or consult with the DBA resource team of specialists.
Build a Medical Care Notebook
Creating a medical care notebook to manage your DBA care is a good idea. You can keep all of your important medical information in one place. You can take the notebook with you wherever and whenever (doctor’s appointments, vacation) you need it. CDC, in collaboration with parents of children with DBA and nurses from DBA National Resource Centers, created all of the forms and information you need to get started.
Enroll in the Diamond Blackfan Anemia Registry (DBAR)
Since DBA is extremely rare, there are gaps in the understanding of the disorder. For this reason, the DBAR was established to collect accurate data on DBA patients and their families. This is a patient registry dedicated to collecting, analyzing, and sharing information on DBA.
Find a Support Network
Contact the Diamond Blackfan Anemia Foundation to get in touch with families in the support network. By finding support within your community, you can learn more about resources available to meet the needs of families and people with a disease as rare as DBA. Securing support and community resources can help increase confidence in managing DBA, enhance quality of life, and assist in meeting the needs of family members.
Join an Online Support Group
This is a semi-moderated website and e-mail group for DBA parents and patients. To subscribe, e-mail: firstname.lastname@example.org.
This is a semi-moderated website and e-mail group for adult patients with DBA. To subscribe, e-mail: email@example.com.
Check Out Camp Sunshine
Camp Sunshine provides respite, support, joy and hope to children with life-threatening illnesses and their immediate families through various stages of a child’s illness. The year-round program is free of charge to all families, and includes 24-hour onsite medical and psychosocial support.
Since 1998, the DBA Foundation has sponsored a week every other year at Camp Sunshine in Casco, Maine. The next DBA week at Camp Sunshine will be during the summer of 2012. Applications will be posted on the Camp Sunshine website in January 2012.
Main Number: 207-655-3800
Talk with a Mental Health Professional
Psychologists, social workers, and counselors can help you deal with the challenges of living with DBA. Talk to your primary care physician for a referral.
Research on DBA and other related conditions may soon lead to better treatments, new cures, and improved quality of life for people with DBA.
- Centers for Disease Control and Prevention
National Center on Birth Defects and Developmental Disabilities
Division of Blood Disorders
1600 Clifton Road
Atlanta, GA 30333
TTY: (888) 232-6348
- Contact CDC-INFO