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What is DBA?
Diamond-Blackfan Anaemia explained simply.
DBA can affect different things in different people, but the main issue is the lack of enough fully matured red blood cells.
1. Red blood cells are delivery trucks
Every part of the body needs oxygen. Red blood cells pick it up in the lungs and deliver it everywhere – to the brain, the muscles and the heart. Without enough of them you get pale, tired and out of breath.
The blue dots are oxygen, dropped off along the way.
2. The factory inside the bones
Red blood cells are made in the bone marrow – a soft "factory" inside our bones. Each cell only lasts about four months, so the factory must keep making millions every second.
With Diamond-Blackfan Anaemia (DBA) the factory's red-cell line hardly works. It is something you are born with – nobody caused it and it isn't contagious.
Busy factory – plenty of cells
Very few cells come out
3. Borrowed blood every three weeks
Because his own factory can't keep up, Viktor gets red blood cells from blood donors – a transfusion – about every three weeks. His level jumps up, then slowly sinks, until it's time again.
- 🩸 Day 1: transfusion at Falu lasarett – full of energy
- 📉 Week 1–2: the borrowed cells slowly wear out
- 😴 Week 3: tired and pale – time for the next one
That's why every blood donation matters. ❤️
4. Too much iron – and the night-time pump
Each bag of blood also brings iron. As Viktor's body can't turn the iron into new red blood cells, it can't get rid of the extra iron either, so it piles up like a bucket that keeps filling – and too much can harm the heart and liver.
The medicine Desferal works like a magnet: it grabs the iron so the body can wash it out. It runs slowly from a small pump through a needle button, five evenings a week.
5. What are the options?
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Getting better by itself
A small number of people with DBA find that their factory starts working on its own – nobody fully knows why.
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Transfusions for life
Many live with regular transfusions plus iron medicine. It works, but it means hospital visits every few weeks – year after year.
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Stem cell transplant
Swapping the factory: a donor's healthy blood-making stem cells replace your own. It can cure DBA, but it is a tough and risky treatment and needs a well-matched donor.
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Fixing the recipe – gene therapy
Repairing the faulty instruction in the patient's own stem cells, so no donor is needed. Dr Johan Flygare at Lund Stem Cell Center has worked on this for 20 years and co-founded the company Apriligen to bring it to patients. Read the article →
Science news
Hand-picked articles on DBA research and gene therapy. DBA and other genetic diseases will be beaten within our lifetime.
Lund Stem Cell Center × Apriligen
After 20 years of research in Lund, Johan Flygare co-founded Apriligen to turn DBA gene therapy into a real treatment. The patient's own blood stem cells get a working copy of the RPS19 gene and are then given back.
In April 2026 the first clinical trial (phase 1) started for children and adolescents in the US – at Stanford and Boston Children's Hospital. Skåne University Hospital is planned as a trial site.
Oct 2025 · University of Cambridge
Scientists grow human blood using embryo-like stem cells in lab breakthrough
Embryo-like "hematoids" grown from human stem cells started making blood stem cells within about two weeks.
Feb 2023 · DBA Foundation
Dr. Flygare to complete clinical sub-study in DBA patients undergoing gene therapy
Funding for a single-cell study that follows the gene-corrected stem cells in patients in the coming gene therapy trial.
Jan 2020 · Scientific American
Gene Therapy Arrives
After decades of setbacks, gene therapies are approved and treating cancers and inherited disorders.
Jan 2019 · British Journal of Haematology (Bartels & Bierings)
How I manage children with Diamond-Blackfan anaemia
A clinical review: steroids, transfusions and stem cell transplantation – today the only cure.
Feb 2017 · Boston Children's Hospital
Stem-cell-derived cells flag possible new treatment for Diamond-Blackfan anemia
Using DBA patients' own reprogrammed stem cells, researchers found a compound (SMER28) that boosted red blood cell production.
We cannot guarantee the articles are still available or correct – they are hosted outside our control.
Medical history
The bigger story, told in a few chapters.
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Mar 2013
Born early
Week 31+5, 1165 grams – and a fighter from day one.
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Apr 2016
Living with DBA
Transfusions every three weeks, condensed into the milestones that matter.
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Sept 2016
Apneustisk andning och kompression
Den värsta dagen och veckan i vårt liv – och en av de bästa, för vår fantastiska kämpe kom tillbaka.