My life is not what I thought it would be but I do things when I can and make the most of the things I can do.

The impact of MDS varies according to severity of the disease. People who have been diagnosed with low risk types should be regularly monitored by a haematologist (ideally every six months as a minimum) but may not need to be treated and can continue with life as normal.

For others, some of the symptoms of MDS, such as tiredness, can have a major impact on everyday life. Supportive care, such as injections of growth factor drugs or blood transfusions delivered via frequent medical appointments, help to relieve symptoms and improve quality of life (QoL).

The prognosis for people with MDS is often unclear and it can be difficult to live with this uncertainty.

+ Employment

Regular appointments and check-ups may mean that employees have to take time off work on a regular basis.

Symptoms such as fatigue can affect performance, particularly in the week before a blood transfusion.

It is a good idea to ensure that employers understand the implications of MDS so that they can take account of specific needs, for example by offering flexible working hours or adapting duties.

+ Mental health

My lowest points were when recovery seemed very slow and out of my control. Times when friends’ lives seemed so different to mine.

MDS is a variable condition with an unpredictable path, making it difficult to plan for the future. Living with uncertainty can lead to anxiety and a sense of vulnerability, particularly when check-ups are due. This is entirely normal.

People with MDS may experience a number of different emotions, particularly when they are first diagnosed. These can range from anger and disbelief to fear and sadness. At other times, patients may feel more positive and in control and this has been described as a “rollercoaster of emotions”.

Symptoms such as fatigue can sometimes make it difficult to take part in social activities and this can lead to feelings of isolation or even guilt, for not being able to fulfil certain roles at home or at work

If negative feelings are becoming difficult to cope with, it is important to ask for help, including seeking advice from a mental health professional. A range of techniques and resources can be helpful. These include relaxation techniques, breathing exercises, meditation, mindfulness, cognitive behavioural therapy or counselling.
The specialist nurse can also be an excellent first port of call to share concerns or difficult emotions. Most are trained to assist in such situations, and can refer further when necessary.

It is helpful to keep as active and occupied as possible and to try to stay connected with other people.

Joining a patient support group for additional information, and to connect to other patients and families can be extremely helpful for both the patient, but also the family members.

It is also important to be open and honest with other people about how you are feeling.

Practical tips for managing low risk MDS >

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