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Myelodysplastic syndromes (myelodysplasia or MDS)

Myelodysplastic syndromes (MDS) are a group of rare blood cancers where you do not have enough healthy blood cells.

There are many different types of MDS. Some types can stay mild for years and others are more serious.

MDS can affect people of any age, but they are most common in adults over the age of 70.

Causes of MDS

Inside some of your bones is a spongy tissue known as bone marrow. This makes:

• red blood cells to carry oxygen around your body
• white blood cells to help fight infection
• platelets to help your blood clot.

With MDS your bone marrow does not make enough healthy blood cells. Instead, it makes abnormal cells that are not fully developed. These cells stop your blood marrow from making enough normal cells.

This condition can develop slowly over many years, or it can happen quickly. Rarely, it can lead to the blood cancer acute myeloid leukaemia.

Why this happens is not understood. But your risk of getting MDS is increased if:

• you have had chemotherapy or radiotherapy treatment in the past
• you have been exposed to certain chemicals, for example, benzene or heavy metals such as mercury or lead
• you smoke
• you have a genetic disorder such as down syndrome.

Symptoms of MDS

In the early stages, you may have no symptoms. Your MDS may be found from a blood test taken for another reason.

If you get symptoms, they may vary depending on how severe your condition is and which type of blood cells are affected.

• Low red blood cells (anaemia) can cause tiredness, lack of energy, shortness of breath, dizziness and looking pale.
• Low white blood cells can mean you have frequent and severe infections.
• Low platelets mean it is harder for your blood to form clots to stop bleeding. This can result in bruising easily, nose bleeds, unusually heavy periods and a pinpoint rash (petechiae).

You may get a combination of these symptoms if several types of blood cells are all low.

Diagnosing MDS

Your health provider will listen to your symptoms, examine you and arrange blood tests.

They may refer you to a haematologist (a doctor who specialises in blood disorders) for further investigation.

This will include a bone marrow biopsy where a sample is taken from inside a bone and looked at under a microscope.

From these results the haematologist will decide which of the several types of MDS you have. This will depend on:

• the number of cell types that are affected
• genetic or chromosome changes
• the presence of absence of various mutations.

Treating MDS

The aims of the treatment are to manage your symptoms and get the number and type of blood cells in your bloodstream back to normal.

The type of treatment will depend on the type of MDS you have, your symptoms and the risk of your disease progressing to leukaemia. Your general health and your wishes will also be considered. There are 4 main options:

• Active monitoring (watch and wait). If you do not need treatment right away, you may just have regular blood tests and checks from your healthcare provider.
• Chemotherapy and other targeted drug therapy.
• Bone marrow transplant (stem cell transplant).
• Treatments to help with symptoms. These can include:
  • blood transfusions
  • growth factor to help your bone marrow make more blood cells
  • treatment for infections, for example, antibiotics and antiviral medicines
  • vaccines to prevent infections.

Self-care for MDS

Aim to keep yourself as healthy as possible. This should include:

• eating well
• keeping active
• not smoking
• stopping or limiting alcohol.

If you are at risk of infection:

• wash your hands often and thoroughly with warm soapy water, especially before eating or preparing food
• avoid foods that are more likely to cause infection. The Ministry of Primary Industries has produced a guide to what is safe to eat and what you should avoid (link downloads a PDF)
• stay away from people who are sick, including whānau (family) members and co-workers
• talk to your healthcare provider about getting vaccinated against diseases such as influenza, COVID-19 and shingles.

If you are at risk of bleeding:

• use a soft toothbrush and do not floss
• use an electric razor rather than a razor blade
• avoid contact sports
• wear protective gloves when working round the house or garden.

It is common to feel depressed, anxious and have difficulty coping at times. It is important to recognise this and to reach out for help from whānau, friends or your healthcare provider if needed.

You can also get support through Leukaemia and Blood Cancer New Zealand who have support groups and can provide information.

  HealthInfo recommends the following pages

• Leukaemia and Blood Cancer New Zealand

  Leukaemia and Blood Cancer New Zealand can provide information and support.

Written by HealthInfo clinical advisers. Page created June 2025.

Sources

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