MDS: key facts

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I have come to terms with my illness and its possible prognosis. I am on ‘watch & wait.’ I have blood tests taken every month and see my consultant every 3 months

Myelodysplastic syndromes (MDS) are a group of rare blood disorders, which prevent a person’s bone marrow from producing enough healthy blood cells.

MDS can affect people of all ages, including children, but it mainly affects older people. Estimates suggest between 75-86% of people with MDS are aged 60+.

There are many different types of MDS. Low risk forms of MDS produce few, if any, symptoms and progress slowly. Higher risk types of MDS can rapidly develop into a type of leukaemia called acute myeloid leukaemia (AML), which is challenging to treat. In lower risk forms of the disease, the chance of this happening is relatively small: approximately 10% of low risk patients will progress to AML. In the higher risk category, approximately 30% will develop AML.

MDS is described as a group of blood disorders but it is also officially classified as a blood cancer. The reason for this is that the stem cells in the bone marrow keep reproducing abnormal blood cells, and this affects how the blood functions. However, some haematologists (blood specialists) hesitate to describe lower risk MDS as a cancer, as the risk of progression is so low.

People with lower risk forms of MDS may experience few, if any, symptoms and the condition may have minimal impact on daily life. If symptoms do occur, current treatments and supportive care are available to manage these symptoms.

The treatment of MDS is constantly evolving. A number of new treatment options are under investigation and these have the potential to improve the outlook for people with MDS, as well as increasing quality of life (often referred to as QoL).

This e-Book focuses on the lower risk forms of MDS.

Making sense of MDS >