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.

  • 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.

  • 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.

  • 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 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.

  • 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.

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.

Outreach Services

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