Myelodysplastic syndrome (MDS) 

Myelodysplastic syndrome (MDS), or myelodysplasia, is a blood disorder that causes a drop in your number of healthy blood cells. MDS covers a spectrum of disorders from indolent (slow developing) to aggressive (that rapidly develop or change into leukaemia).

  • What happens in MDS?

    Normally, blood cells are made in the bone marrow, these include:

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

    In MDS, your bone marrow doesn't make enough healthy red blood cells, white blood cells and/or platelets. Instead, it makes abnormal numbers of cells and/or cells that don’t work properly.

    As the condition develops, your bone marrow becomes full of the abnormal blood cells, which may spill out into your bloodstream.

    The most common types of myelodysplasia are:

    • refractory anaemia – just the red blood cells are affected
    • refractory cytopenia – the red blood cells, white blood cells and platelets are affected
    • refractory anaemia with excess blasts (RAEB) – the red blood cells, white blood cells and platelets are affected, and there's a higher risk of developing acute leukaemia

    "Refractory" means the condition doesn't respond to treatment that doctors would normally use for low blood cell counts.

    There are also other more rare types of MDS including

    • chronic myelomonocytic leukaemia
    • MDS/MPD
    • Secondary MDS
  • What are the symptoms?

    For most people, symptoms are mild at first and slowly get worse. Sometimes you may even have no symptoms at all, but have had a blood test that shows there is a problem. You may initially experience:

    • weakness, tiredness and occasional breathlessness –because of the low number of red blood cells
    • frequent infections –because of the low number of white blood cells
    • bruising and easy bleeding (such as nosebleeds) – because of the low number of platelets

    Symptoms will depend on the type of MDS you have – for example, some people just have a problem with their red blood cells and have symptoms of anaemia, while others may lack all types of healthy blood cell.

  • Who is affected?

    MDS can affect people of any age, but is most common in people over the age of 65. Only one in five people with MDS are younger than 50.

  • What are the causes?

    In most cases, the cause is unknown – this is called primary MDS.

    In rare cases, MDS is caused by radiotherapy or chemotherapy treatment for cancer. This is known as secondary MDS, or treatment-related MDS.

    In very rare circumstances a family tendency to the disease can be identified because of an abnormal gene.

  • Is MDS cancer?

    Yes. We know this because all the MDS blood cells carry some genetic mistakes that have caused them to develop abnormally. However, many patients with MDS do not require treatment for many years. Some people with MDS go on to develop acute myeloid leukaemia (AML), which is a more aggressive cancer of the white blood cells. This is known as "transformation".

    The risk of transformation can be assessed using a scoring system called the International prognostic scoring system – Revised (IPSSR). You can see the information used to calculate this here

    http://www.mds-foundation.org/ipss-r-calculator/

    For the lowest risk patients the time to 25% of the patients getting leukaemia is more than 10 years. For the highest risk patients it is 9 months.

  • MDS UK Patient Support Group

    Support for patients with Myelodysplastic Syndromes and carers.

    http://www.mdspatientsupport.org.uk/

 Consultants

Prof Adele Fielding, Consultant Haematologist

Prof Adele Fielding

Adele Fielding is Professor of Haematology at UCL with a clinical practice at UCLH, where she works within the leukaemia service. Her primary expertise is in acute lymphoblastic leukaemia. She chairs the UK National Cancer Research Institute Adult ALL subgroup. As a clinician scientist, she is heavily involved in the UK's clinical trials programme for ALL and am Chief Investigator of UKALL14 and UKALL60+, the UK's frontline academically-initiated trials for ALL. Her research lab program takes advantage of the opportunity to do translational work arising from these trials.

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Prof Asim Khwaja, Consultant Haematologist

Prof Asim Khwaja

Professor Asim Khwaja is a consultant haematologist at UCLH and professor of Haematology at the UCL Cancer Institute. He is lead clinician for adult acute leukaemias at UCLH specialising in the treatment of acute myeloid and lymphoid leukaemias. He is a member of the National Cancer Research Institute Haematological Oncology Clinical Studies Group and of the Cancer Research UK New Agents Committee. His area of particular research interest is studying the messages that cause blood cancer cells to grow out of control and in developing new targeted therapies that block these signals.

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Dr Panagiotis Kottaridis, Consultant Haematologist

Dr Panagiotis Kottaridis

Dr Panos Kottaridis is a consultant haematologist specialising in leukaemia and bone marrow transplantation.

Dr Marc Mansour, Consultant Haematologist

Dr Marc Mansour

Dr Marc Mansour is an honorary consultant haematologist at UCLH and research group leader at the UCL Cancer Institute. He undertook his medical degree at the University of Edinburgh, medical training at King's College London and UCLH, followed by an MRC Clinical Research Training PhDship in the laboratory of Professors David Linch and Rosemary Gale at UCL, where he studied Notch signalling in acute leukaemia. He was funded by the Kay Kendell Leukemia Research Fund to undertake a travelling fellowship at Harvard Medical School and Dana-Farber Cancer Institute in Boston, USA. He was awarded the HMS Claudia Adams Barr Innovative Research award, and was a Harvard Medical School faculty member from 2012-2014. He is currently funded as a Bennett Senior Fellow by Bloodwise.

His research has focused on two aggressive haematological malignancies - T-cell acute lymphoblastic leukaemia (T-ALL) and acute myeloid leukaemia (AML). He has published extensively on the biology of acute leukaemia, authoring papers in Science, Nature, Nature Cell Biology, JCI, ELife, JCO and J Ex Med. His clinical interest is in ALL, AML and myelodysplasia (MDS).

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Dr Beth Payne, Honorary Consultant Haematologist

Dr Beth Payne specialises in the treatment of MDS and Bone Marrow Failure. She is also a Senior Clinical Researcher funded by the Wellcome Trust and The Leuka John Goldman Fellowship for future Science and runs a research laboratory studying the mechanisms of disease in bone marrow failure and myelodysplastic syndromes and is also working to develop novel therapeutics.

Her areas of research interest are MDS and Bone Marrow Failure, especially Diamond-Blackfan Anaemia and 5q-syndrome MDS. She has also been involved in research projects in acute lymphoblastic leukaemia, acute myeloid leukaemias with CEBPA mutations and biology and management of familial MDS/leukaemia and bone marrow failure.

“The most rewarding part of my work is getting to know and treat patients and working with an amazing team of doctors, nurses and other support workers”

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 Clinical Nurse Specialists (CNS)

Syeda Ahmed, Clinical Nurse Specialist for Myeloproliferative Neoplasms (MPN)

Syeda is a clinical nurse specialist in MPN. She has experience in haematology in both inpatients and outpatients as a ward nurse and ward manager. She joined the clinical nurse specialists in 2014 at the Royal Free Hospital to work with MPN patients. Syeda’s experience within haematology includes symptom management, chemotherapy, bone marrow transplant and acutely unwell patients.

Syeda has undertaken further studies and holds a BSc in haemato-oncology from Kings College London.

“The most rewarding part of my job is making a difference to the patients and their family’s lives by supporting them through their diagnosis and beyond.”

Flora Dangwa, Leukaemia Clinical Nurse Specialist

Flora is a clinical nurse specialist working with patients diagnosed with acute leukaemia and related myelodysplastic syndromes. She has experience working in haematology as a clinical nurse specialist and clinical research nurse. She holds a diploma in Cancer Nursing from The Royal Marsden as well as an MSc Advanced Nursing Practice – Cancer from King’s College.

Flora’s areas of special interest include patient advocacy, voluntary work supporting leukaemia and myeloma charities.

“The most rewarding part of my job is improving patient experience by working with patients, their families and carers so that they feel informed, supported and cared for at all times.”

Clair Isworth, Myelodysplasia and Acute Leukaemia Clinical Nurse Specialist

Clair Isworth
Clair specialises in acute leukaemias, with a special interest in MyeloDysplastic syndromes (MDS) and aplastic anaemia (AA) and has spent her nursing career focusing on the care of cancer patients of all ages. She is currently undertaking her Masters degree and is researching innovation for excellence and service improvement, which is aimed at improving the patient experience through cancer treatment pathways.

“The most rewarding part of my role is to be able to implement change, and be part of leading a service and dedicated team that evolves and continues to strive for excellence for our patients and their outcomes”.

Gemma Trout, Leukaemia Clinical Nurse Specialist

Gemma Trout

Gemma specialises in adults with acute myeloid leukaemia, acute promyloctic leukaemia and acute lymphoblastic leukaemia. She also works with mylodysplasia and aplastic anaemia patients.

“The most rewarding part of working at UCLH is the incredible multi-disciplinary team that work in haematology to provide excellent, specialist care to our patients. I have worked in the Haematology Unit since qualifying in 1998 – how long I’ve been here is a testament to the team we have here. I am challenged every single day and I learn so much from my colleagues and my patients”



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