Myelodysplastic syndrome

Also called MDS, Myelodysplasia

Bone marrow that makes faulty blood cells. Often found on a routine blood test, and often watched rather than treated.

What it is

A group of blood cancers in which the bone marrow makes blood cells that do not mature or work properly. It mainly affects people over 70.

The result is low counts of one or more blood cell types: anaemia causing fatigue, low white cells causing infections, and low platelets causing bruising and bleeding.

It sits on a spectrum. Lower-risk MDS can be stable for years and is often managed with monitoring and transfusions. Higher-risk MDS can progress to acute myeloid leukaemia, and is treated more intensively.

Many people are diagnosed after a routine blood test done for something else, and the experience of being told you have a blood cancer and that the plan is to watch it is extremely hard. Watch and wait is appropriate care, and it needs explaining as such.

Regular red cell transfusions cause iron overload over time, which damages the heart and liver, so iron chelation is sometimes needed. See haemochromatosis for what iron loading does.

The only curative treatment is a stem cell transplant, which is intensive and suitable for a minority, usually younger and fitter patients.

Signs you might notice

Fatigue and breathlessness out of proportion to activity, from anaemia.

Repeated or unusually severe infections, or infections that will not clear.

Easy bruising, bleeding gums, nosebleeds, or a rash of tiny red or purple spots that does not fade under a glass.

Pallor, dizziness, palpitations.

Often none at all, with the diagnosis made from a blood test.

Urgent, same day: fever in anybody with low white cells, which is a medical emergency; a non-fading rash; bleeding that will not stop; or sudden severe breathlessness.

Any unexplained persistent abnormality on a full blood count deserves following up rather than repeating indefinitely.

How it can affect day-to-day life

The transfusion rhythm dominates for many people: a day in hospital every few weeks, with energy that rises after a transfusion and falls before the next. Planning life around that pattern is the practical reality.

Fatigue is the dominant symptom and is under-treated. It is not laziness and it is not depression, though depression frequently accompanies it.

Infection risk shapes daily decisions, and people need a clear, personalised answer about what precautions actually apply to them rather than generic advice.

Because it mostly affects older people, treatment decisions are often about quality of life rather than cure, and honest conversations about that are more useful than optimism.

Iron overload after many transfusions is a real, monitorable problem that is sometimes overlooked in older patients.

Supporting someone well

Take fever seriously; with low white cells it is an emergency, and there should be a card with a number on it.

Learn the glass test for a non-fading rash.

Ask what risk group the MDS is in; it determines everything about the plan.

Ask about ferritin monitoring and iron chelation if having regular transfusions.

Ask for the clinical nurse specialist and for psychological support, including during watch and wait.

Ask about clinical trials; MDS has an active research pipeline.

Plan energy around the transfusion cycle rather than fighting it.

Keep vaccinations up to date, and get dental problems dealt with promptly.

Where to get help

A GP practice for persistent unexplained blood count abnormalities; haematology for diagnosis and management.

The haematology emergency number for any fever during treatment.

Blood Cancer UK on 0808 2080 888.

Leukaemia Care run a 24-hour helpline on 08088 010 444.