In most national registries, approximately 40% of patients with DBA are transfusion-dependent, having failed to respond or having become refractory to steroids, while 40% are steroid-dependent, and 20% are transfusion-independent on no medication (‘‘in remission’’) (Willig et al, 1999a; Lipton et al, 2006). Remission occurs in some patients who are initially steroid responsive when steroids can be stopped completely with continued maintenance of adequate hemoglobin levels. A small number of steroid non-responders may also enter remission even after prolonged transfusion dependence. The DBAR defines remission as a stable, physiologically acceptable hemoglobin, maintained for at least six months independent of corticosteroids, transfusions or other therapy. Seventy percent of the remitters in the DBAR did so within the first decade of life. Most patients have a sustained remission, but some can go in and out of remission. Hormonal stress in pregnancy appears to be an important factor contributing to ‘‘relapse’’; this may be transient. Remission in DBA patients is not uncommon, but it is still unclear what “triggers” a remission or causes someone to relapse.
Brooke – 7 years
Abby – 6 years
DBA is a part of who I am… it does not define me nor will it stand in the way of my hopes and dreams.
Keegan – 2 years
We are not the first to say this and we will not be the last, the DBAF has saved our child’s life. I cringe at the thought of what her care would be had we not met the DBAF.
Jason – 42 years
I AM DBA STRONG…Take Charge of your DBA!
Angus – 4 years
Our greatest inspiration!
Kendra – 34 years
With out the DBAF I would not be connected to others that have Diamond Blackfan Anemia. The DBAF has saved my life by educating me on what I need to do to combat this rare illness.
Nicholas – 18 years
DBA has taught us many things – Never give up – Be grateful for the strength to fight the fight and always cherish the arms we rest upon for support.
James Thomas – 3 years
Never give up on something that you can’t go a day without thinking about.
Dean – 11 years
DBA is hard but it’s my child’s life. I have to teach him how to live life with it. I will advocate and help find a cure. The DBAF is helping us improve his life.
Pascal – 11 Years
It has been seven years since DBA became part of our vocabulary. Our son’s diagnosis brought confusion, apprehension and despair. The discovery of DBAF is a stroke of serendipity. While even more tears were shed, these are now mingled with knowledge, understanding and, more significantly, hope. It will be through research that our son will be able to secure a brighter future.