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MDS Awareness day

written by

Leukaemia Care, Charity

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“Living with uncertainty has been a phrase which I have often used in the past. But living with MDS tests it to extremes. In reality, it’s very difficult to live when you are uncertain what the next few months or years have in store for you. Uncertainty breeds anxiety.”

Today is World MDS Awareness Day. Celebrated every year on the 25th October, the awareness day is an opportunity for patients with myelodysplastic syndromes, their families and patient organisations to come together to help raise awareness of MDS and to find ways to better support those patients with these rare blood cancers.

Myelodysplastic syndromes (MDS) are a group of diseases where the production of blood cells by the bone marrow is disrupted. The bone marrow in a patient with MDS is usually more active than normal but there are fewer blood cells in the circulation. This is because the stem cells become unable to produce a high enough quantity and/or are poor quality (dysplastic) and so they are destroyed before they leave the bone marrow.

There are over 2,150 people diagnosed with MDS in the UK each year. About one in five (20%) MDS patients have no signs or symptoms and are often diagnosed by chance as a result of a routine blood test. The low levels of healthy blood cells in their bone marrow can cause symptoms such as anaemia, fatigue, night sweats, frequent infections, itchy skin, bone pain and bruising and/or bleeding more easily.

Being diagnosed with MDS can have a huge emotional impact on both the patient and their families. Patient organisations like Leukaemia CARE and MDS UK offer support and information for anyone affected by these rare blood cancers. Leukaemia CARE, in collaboration with MDS UK and Bloodwise, has published a comprehensive MDS booklet for patients, which you can find here.

There are several different classifications of MDS, which are based on the appearance of the bone marrow and the blood cells. Not all patients with MDS will need to receive treatment immediately but will have regular check-ups to monitor the progression of the disease.  This is called “Watch and Wait”, which can be very difficult to cope with, knowing that you have a blood cancer but you are not receiving treatment.

Most people with MDS, however, will have treatment at some point to control and improve their symptoms. The type of treatment that each individual patient receives will very much depend on the type of MDS that patient has, their IPSS-R risk group and if they have any comorbidities. Patients with MDS may have to have blood transfusions, iron chelation therapy, chemotherapy or targeted therapy. Outside of this, the only curative treatment option would be a stem cell transplant but many patients who are older, or have other additional health issues, are likely to be unable to undergo such invasive treatment.

The average age of a MDS patient is 74 years old, although younger people can be affected too. Here, Sam shares his story of how wanting to donate blood eventually led to him being diagnosed with MDS (at just 24) and how he has tried to stay positive throughout his treatment and recovery.  

This World MDS Awareness Day, we want to hear about your experience as a blood cancer patient so that we can better support those affected by MDS and other blood cancers. We are currently running our patient experience survey so that we can campaign and drive change on issues about NHS care that matter to you. Help us by sharing your experience here