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Myelodysplastic syndromes (MDS)

Myelodysplastic syndromes (MDS) are a group of conditions where your bone marrow does not work properly and makes faulty blood cells. MDS is a type of blood cancer.

In this section:

What is MDS?

Myelodysplastic syndromes (MDS) are a group of conditions where your bone marrow does not work properly and makes faulty blood cells. MDS is a type of blood cancer.

Bone marrow is the spongy tissue found inside some of our bones. It's where the body makes blood cells. If everything's working normally, the bone marrow makes healthy blood cells, and the right number of each type gets released into your bloodstream. But in MDS, this process has gone wrong.

The result is that the number of one or more types of healthy blood cell in your blood is reduced. There are different types of MDS, which each behave in different ways.

Around 2,150 people are diagnosed with MDS in the UK each year. It can be diagnosed at any age, but it's more common as you get older. Find out more about MDS:

Finding out you have MDS

Being diagnosed with MDS, or having someone you love get diagnosed, has probably come as a shock. You might be feeling very overwhelmed, especially if you've never heard of MDS.

Sign up to our weekly support email for people recently diagnosed. It gives you clear and simple information, practical tips and advice from others with blood cancer, to help during the first few weeks and months after diagnosis.

"I've recently been diagnosed with myelodysplastic syndrome (MDS). Just wondering if there are any stories of people going through the same diagnosis of MDS?"

People with MDS are discussing how they feel about treatment and supporting each other on our online forum. Read the conversation and join if you want to here: Being diagnosed with MDS

Prognosis for MDS

The way MDS develops over time varies a lot from person to person. For some people it develops very slowly and stays the same for many years. For others, it develops much faster. For some people, it can develop into another type of blood cancer called acute myeloid leukaemia (AML).

Your doctor can tell you more about how MDS is likely to develop for you. The main way they do this is by working out your risk group.

You can read more about how MDS develops and risk groups on our MDS prognosis page.

Symptoms and tests for MDS

The main symptoms of MDS are caused by having low levels of healthy blood cells. Symptoms vary from person to person, depending on which blood cells are affected.

The main symptoms of MDS are:

  • anaemia - this can make you feel very tired, weak and breathless
  • bruising and bleeding easily
  • infections

If your doctor thinks you might have MDS, they will do some tests to find out more. If you've been diagnosed with MDS, you'll have tests to monitor the MDS and to check if any treatment is working.

Find out more about MDS symptoms and tests:

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Causes of MDS

MDS is caused by changes (mutations) in the DNA inside blood cells. We don't know exactly why this happens to some people and not to others.

We do know there are some risk factors that make people slightly more likely to get MDS. These include:

  • age (most people diagnosed are over 50, and the typical age is 75)
  • being born male
  • previous chemotherapy or radiotherapy
  • family history (very rarely, MDS can be inherited)
  • some genetic disorders
  • other blood conditions
  • exposure to toxic chemicals

While these things slightly increase the risk of developing MDS, it can happen to anyone and it's not because of anything you have done. For most people with MDS, no specific trigger or cause can be found. Find out more about causes of MDS:

Watch and wait for MDS

Because MDS is often slow-growing, many people don’t need treatment straight away. Some people don’t need treatment for many years.

If your doctor doesn’t think you need treatment for MDS, you’ll go on watch and wait. This means you’ll have regular check-ups to monitor the MDS.

Being on watch and wait can be tough emotionally. Read more about what to expect on watch and wait:

Treatment for MDS

If you need treatment for MDS, the treatment your doctor recommends will depend on the type of MDS you have, your MDS risk group and your general health.

Treatment can vary a lot from one person to another. Some people just need treatment to manage their symptoms, while others need treatment that aims to control or get rid of the MDS.

There are three main types of treatment for MDS:

  • Supportive care - these are treatments that don't target MDS itself, but manage the symptoms.
  • Intensive treatment - this gives the best chance of getting rid of MDS completely, but means having strong treatment that can cause lots of side effects so isn’t right for everyone.
  • Non-intensive treatment - these are gentler treatments that don't get rid of the MDS, but aim to slow its progress for as long as possible.

Treatment for MDS can cause side effects, but everyone reacts differently. Tell your hospital team if you get any side effects, as there are ways to help reduce them.

Find out more about MDS treatment and side effects:

Research and clinical trials for MDS

Research continues to find new treatments for MDS and improve existing ones.

In The Road to Beating MDS, Professor Ghulam Mufti explains how things have changed for people with MDS throughout his career, the exciting progress made in genetics, and how we'll go about curing MDS on a global scale.

If you are interested in joining a clinical trial (a research project involving people), we can help.

Contact our Clinical Trials Support Service.

Living well with MDS

For most people, getting a diagnosis of MDS will come as a shock. The news can be life-changing and a lot to get used to. But you're not alone. Support is available, and with some adjustments, you can still live your life and do the things you enjoy.

Find out more about living well with MDS:

Your guide to MDS

This free booklet covers:

  • finding out you have MDS
  • understanding you have MDS
  • coping with watch and wait
  • MDS treatment
  • living well with MDS
  • real stories of people living with MDS

You can order it free from our online shop.

Cover of the booklet Myelodysplastic syndromes (MDS). your guide to diagnosis, treatment and living well with MDS.

Many thanks to consultant haematologists Dr Daniel Wiseman and Dr Pramila Krishnamurthy for checking the medical accuracy of our MDS information.

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