Redbridge SERC

Description

Description

Description

Diamond Blackfan Anaemia is

  •          A rare bone marrow disorder
  •          Caused by a genetic “error” that occurs sporadically rather than being inherited.
  •          DBA can cause fatigue, poor growth, lack of appetite and a pale complexion.
  •          50% patients with DBA also have some congenital abnormality

Fact sheets

Training / Help

Newbridge Outreach 

Community Nursing Team 

Videos

Screenshot for video: Audrey Nethery DBA Awareness Page

Audrey Nethery DBA Awareness Page

A YouTube channel around the exploits of a young girl with DBA.

Screenshot for video: ‘Living with Diamond Blackfan Anaemia’

‘Living with Diamond Blackfan Anaemia’

A parent talks about what life is like for her son who lives with DBA.

Frequently Asked Questions

  • Can anyone have DBA?

    DBA affects both boys and girls, and every ethnic group. 

    Diagnosis is normally made when a child is less than 2 years old.

  • How is it treated?

    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.

  • What is Chelation Therapy?

    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.

  • What causes DBA?

    Some patients have a family history of DBA. 

    50% have a genetic cause. 

    In many cases, they do not know the cause.

  • Can other family members have DBA?

    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. 

  • What are the signs and symptoms of DBA?

    Common symptoms are the same as anaemia, including pale skin, sleepiness, rapid heartbeat and a heart murmur.

  • What is bone marrow/stem cell transplantation?

    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.

  • Why are blood transfusions helpful?

    In a blood transfusion, a person receives healthy red blood cells from another person.

    Transfusions may be needed every 3-5 weeks.

  • In what activities can a DBA patient engage?

    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.

Family Resources

Government website signposting to information

Website: 
http://www.gov.uk/browse/disabilities
Description

All areas of benefit entitlement accessible from here including employment, benefits, carers’ benefits, blue badge and much more.

Ipsea

Website: 
http://www.ipsea.org.uk
Description

Independent parental education support service.