NHS services are gradually returning back to some normality. However it won’t be quite the same as pre-covid times. We asked the MDS experts to explain what patients may expect in the weeks and months to come. And – to remind all patients that despite covid, isolation, shielding  and perhaps not seeing your usual clinical […]

The Harmony Alliance has put together data handling procedures to ensure the maximum protection of the patient’s privacy while leaving the data rich enough for it to be analysed. Several boxes must be checked before a data record may enter the Harmony Data Platform the data is carefully checked for completeness and correctness “harmonized”, i.e. […]

The Harmony Alliance uses big data to improve care for patients with blood cancers such as leukemia lymphoma and MDS. It aims to develop treatments that are: more effective have fewer side-effects secure a higher quality of life However the best possible treatment may differ from one person to another. This is partly due to […]

Blood cancers such as MDS and Leukemia have an impact on the production and function of blood cells. Developing and optimizing treatments for these life-threatening diseases, many of them rare, can be a complicated process. Collecting and harmonizing high-quality data on outcomes of existing treatments is crucial, but often hampered by lack of data as […]

Claudia Richards, MDS patients, trustee and local group coordinator, MDS UK Patient Support Group, explains why she would like more general haematologists and nurses to attend the UK MDS Forum education day, and highlights the many benefits, from a clinical as well as a psychological point of view.

Claudia Richards, Local group coordinator, MDS UK Patient Support Group, talks about the many benefit of attending a local group meeting.

Janet Hayden, King’s College Hospital, London and Anna Gibson, St James Institute, Leeds, are both MDS Clinical Nurse Specialists. Janet explains the meaning and impact of the various scientific tests performed on blood and marrow samples – in particular the myeloid gene panel tests. Anna talks about the benefit of having extra information on your […]

Anna Gibson, St James Institute, Leeds, MDS Clinical Nurse Specialist, talks about ways to alleviate the anxiety or sometimes depression encountered by many patients on regular blood transfusions, and how the community spirit in the transfusion wards can really help.

Claudia Richards, Local group coordinator, MDS UK Patient Support Group – explains her own emotional journey as an MDS patient, from fraught times at diagnosis 8 years ago – to becoming an empowered, educated, active patient – and therefore a calmer and stronger person.

Dr Harpreet Kaur, Consultant Haematologist, Sheffield, talks about the importance and need and patient’s right for 2nd opinions – and how these requests for an additional opinion will never offend her.

Professor Fabio Efficace, Professor of Medical Social Sciences, GIMEMA Data Center, Rome, Italy, talks about the importance of measuring QOL in MDS, in a proper scientific way, in order to use it in treatment decisions and clinical trials.

Dr Shahram Kordasti, Haematologist, King’s College London, explains the role of the immune system in MDS, how we can use that immune response to change the course of the disease, and how this may lead to a more personalised treatment approach of MDS.

On the 25th of October is MDS World Awareness Day.  On this day MDS UK and MDS patient groups all over the world join forces to get the word out about MDS.This video was made by the MDS Alliance – the global umbrella organisation gathering all MDS Patient Support Groups – to mark World Awareness Day.Would you like to help […]

Russell Cook, Myelodysplastic Syndrome patient tells us about the stem cell transplant experience that saved his life.He is unusual, as he received three transplants – two from an unrelated donor – which failed – followed by a stem cell donation from his son 15 year old son Luke – which finally worked. Russell has since […]

Evie McClean is an incredibly talented young person who started a YouTube Channel in March 2016, telling the world about her life and her favorite things.Evie is a member of the MDS UK Patient Support Group and in her lively video clips she illustrates how wonderfully she and her family have learned to live with MDS. In […]

Life Beyond Limits – Full HD Spanish English subtitles from GEPAC on Vimeo.This video was made to mark the first MDS World Awareness Day – on 25th October 2012 – and to illustrate the Life Beyond Limits campaign already run in several countries.This campaign highlights the fact that all MDS patients deserve to have access […]

In this video Prof Mufti, from King’s College Hospital, gives a detailed explanation of MDS, discusses causes, progression, diagnosis and treatment of MDS.  He also talks about the challenge of managing MDS and how awareness of the condition has improved – but more still needs to be done.Professor Ghulam Mufti, Head of the department of Haematology […]

Patricia talks about her diagnosis of MDS and the changes she experienced, as well as blood transfusions and what it feels like to live with MDS.

Ramsey discusses his personal MDS story, symptoms, how he manages his condition, and how important it is to highlight the effects of MDS on patient’s quality of life.

Janet Hayden talks about newly diagnosed MDS patients, symptoms of MDS, difficulty in managing the condition, drug treatments, and challenges faced by clinical staff – as well as awareness of MDS.Janet Hayden is a Myeloid CNS and works with Professor Ghulam Mufti at King’s.  She specialises in Myeloid conditions.  King’s is privileged to have a […]