My Journey with MDS

What is MDS? *


Myelodysplastic Syndrome (MDS) describes a malfunction of the bone marrow in producing the correct quantity and quality of blood cells.

Myelo = Bone Marrow

Dysplastic = strangely shaped or abnormally shaped

MDS are a group of malignant blood disorders – and are types of Bone Marrow Failures.

Cells that can be affected:

  • Red cells (also called erythrocytes) – which carry oxygen to organs and tissues in the body.
  • White cells – which collectively fight against infection.
  • Platelets (also called thrombocytes) – which prevent us from bruising and bleeding.

One or more of these can be affected by MDS.   Many people, newly diagnosed with MDS, have not heard of this disorder before.  Some, diagnosed early, do not even feel unwell.

There are different levels of severity of MDS – ranging from Low-risk, Intermediate 1, Intermediate 2 to High-risk MDS.

MDS is not a type of Leukaemia – but does fall under the umbrella of malignant blood disorders.


A person with MDS will suffer from chronic tiredness and weakness due to the low levels of haemoglobin.
This is debilitating in itself and often requires regular blood transfusions. Transfusions are time consuming and restrictive.

In MDS, platelet numbers, which prevent bleeding and bruising, can often be very low.
This can result in spontaneous bleeding and bruising.
If an injury is sustained blood loss may be excessive. Clearly these factors result in many constraints and difficulties. Platelet transfusions may be required on a regular basis and once again these are time consuming and restrictive.

When white cells numbers become very low (as they often do in MDS) the body is unable to fight off infection normally.  This results in a greater than usual incidence of infections which take longer than usual to clear.  Medication is frequently required, as is hospitalisation. Some common illnesses eg chickenpox can be very serious for a person with MDS.  White cells cannot be given by transfusion.  The risk of contracting infections from crowded, public places obviously imposes restrictions on a person’s life and on the life of their family.


Treatment of MDS is difficult and treatment decisions are based on the International Prognostic Scoring System (IPSS).

The only cure is a bone marrow transplant for those patients who are fit enough and who have a suitable donor.   Recovery may take months or even years and during this time the patient has to be monitored regularly and where necessary, be supported with transfusions.


* with thanks to MDS patient support group

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