Myelodysplastic syndromes (myelodysplasia or MDS)

Bone marrow is a spongy tissue found inside some of your bones. It makes:

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

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

MDS can develop slowly over many years, or it can happen quickly. Although rare, it can lead to the blood cancer acute myeloid leukaemia. 

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

• have had chemotherapy or radiotherapy treatment in the past
• have been exposed to certain chemicals, for example, benzene or heavy metals such as mercury or lead
• have a genetic condition such as Down syndrome
• are, or have been, a smoker.

In the early stages of MDS you may have no symptoms. It 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. 

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

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

Bone marrow biopsy

The results will help the haematologist 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
• whether there are any particular genetic mutations (faulty genes).

The aims of the treatment are to:

• manage your symptoms
• get the number and type of blood cells in your bloodstream back to normal.

The type of treatment will depend again 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

If you do not need treatment right away, you may just have regular blood tests and checks from your healthcare provider.

Chemotherapy

Chemotherapy and other targeted drug therapy.

Chemotherapy — Cancer Societyexternal link

Bone marrow transplant

Bone marrow transplant (stem cell transplant).

Stem cell transplant — Leukaemia and Blood Cancer New Zealandexternal link

Other treatments

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.

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

• eating well
• keeping physically active
• socialising by staying in touch with friends and whānau
• keeping a regular sleep pattern
• not smoking
• stopping or limiting alcohol.

To reduce your risk of infection:

• wash and dry your hands thoroughly, especially before eating or preparing food, and after going to the toilet or touching pets — use warm soapy water
• avoid food-related infections by being careful when storing, preparing and cooking food
  Food for people with low immunity — Ministry for Primary Industriesexternal link
• stay away from people who are sick, including whānau members and coworkers
• talk to your healthcare provider about getting immunised 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 ask for help from whānau, friends or your healthcare provider if needed.