Description
Diamond Blackfan Anaemia is
Newbridge Outreach
Community Nursing Team
A YouTube channel around the exploits of a young girl with DBA.
BBC Three ‘Extraordinary Children’ video around a 5 year old with DBA.
The two common options for treating DBA are corticosteroids and blood transfusions.
Bone marrow/stem cell transplantation may also be considered.
Some patients may also need Chelation Therapy.
DBA affects both boys and girls, and every ethnic group.
Diagnosis is normally made when a child is less than 2 years old.
Red cell transfusions can also cause a build-up of extra iron in the body which can harm the heart and/or liver, cause diabetes, or slow down normal growth.
Chelation Therapy is used to remove excess iron in body tissues.
Some patients have a family history of DBA.
50% have a genetic cause.
In many cases, they do not know the cause.
Common symptoms are the same as anaemia, including pale skin, sleepiness, rapid heartbeat and a heart murmur.
Bone marrow/stem cell transplantation replaces a patient’s bone marrow/stem cells with those from a healthy, matching donor.
A patient’s old, faulty bone marrow is destroyed to make way for the stem cells.
This leaves the patient in a weakened state for some time, with long stays in hospital likely.
However, there are many people who have been successfully treated after having suffered the symptoms of DBA.
A stem cell transplant is only considered after every other treatment avenue has been exhausted.
Siblings have a 1 in 4 chance of being a match.
Most families only have one child with DBA.
However, in 10% of cases, there is more than one affected family member.
If you have DBA, there’s a 50% chance your children will have DBA.
In a blood transfusion, a person receives healthy red blood cells from another person.
Transfusions may be needed every 3-5 weeks.
Depending on the patient’s medical condition and his/her doctor’s advice, but most patients are encouraged and able to get some form of physical exercise every day.
Normal physical activity is generally permitted.
Independent parental education support service.
All areas of benefit entitlement accessible from here including employment, benefits, carers’ benefits, blue badge and much more.