Living well with MDS
Watch this story that explains MDS to all:
How are you dealing with your Myelodysplastic Syndrome (MDS)?
The impact of having MDS can be significant, affecting both your body and your emotional state.
Each person with MDS will cope in their own unique way, so not everything will apply to you. But as you watch the videos of other patients and read other MDS patient stories you might find that many of the emotions they experience are familiar to you.
Here we will go through some of these common thoughts and emotions you may possibly experience and suggest some ways in which you could help yourself. We will also give you some advice on eating well, fighting fatigue and adjusting your life priorities. We hope these will help you to keep positive.
Your healthcare team is there to help you with your feelings, as well as your physical needs. Talk to them or contact us if you feel you need support. You can also share and get support on our MDS UK Members Facebook group and find people who have faced similar issues.
New MDS Guide (2024)
A downloadable comprehensive MDS Guide for patients, families and care-givers which describes the various types of MDS, diagnosis, treatment and more. Co-written by the MDS UK Patient Support Group and Leukaemia Care, this guide is a brand new edition (April 2024).
If you'd prefer a hard copy,email us at admin1@mdspatientsupport.org.uk and we'll be happy to post one out to you.
Coping with a diagnosis of MDS or CMML
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Video presentation: 'The emotional impact of a diagnosis of MDS or CMML'
A video presentation by Surabhi Chaturvedi, senior psychotherapist at King's College Hospital, London, on the emotional impact of a diagnosis of MDS or CMML with strategies for coping and living well.
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Blood Cancer: Supporting mind and body
A piece by Surabhi Chaturvedi about the importance of supporting people's mental well being through out the course of their illness.
Surabhi Chaturvedi is an integrative psychotherapist with a background in clinical psychology. She leads a team of psychological therapists in a leading Haematology, Stem Cell Transplant, and Cellular Therapies unit in King’s College Hospital, London. The unit provides psychological support to patients and families affected by blood cancers and bone marrow failure, and offers training on psychological care of Haematology patients.
Haematology Patient Support
Hear this advice from clinical staff with a great summary of the range of services that are available and some really helpful tips to help you cope.
Coping with Anxiety by Anne Crook
It is absolutely normal to feel anxious, we all do at times. However, anxiety in itself can worsen our quality of life significantly, as it can cause muscle tension, difficulty in breathing and tension headaches among other symptoms. In this presentation you'll learn how anxiety works and some useful coping strategies.
Making Adjustments
MDS and Quality of Life by Geke Ong
Quality of life is the gap between one's life expectations and life experiences. The physical impact of MDS will affect your Quality of life. In this presentation you'll learn how to make adjustments on your expectations and regain QOL by focusing on those things that are truly important to you.
We have an active and supportive Members Facebook group where you can connect directly with fellow MDS & CMML patients, families and caregivers. Becoming a member gives access to all of our services, (membership is free and you can sign up through our Membership page ).
Diet and Nutrition
Nutrition Information and advice & neutropenic diets
Factsheet for Myelodysplastic Syndrome (MDS) Patients
The Neutropenic Diet by Natasha Jones
Natasha Jones Specialist Dietitian – Haematology & Palliative Care
Dealing with Fatigue
Fatigue Factsheet: Effects &self-management tips
Fatigue factsheet for Myelodysplastic Syndrome (MDS) Patients
Practical Advice
Useful Links
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Macmillan Benefits National Helpline 0800 500 800 (we recommend calling this helpline first)
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Disability Living Allowance & Attendance Allowance 0845 7123 456
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Employment Support Allowance 0800 055 66 88
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Carers Allowance 0845 608 4321
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Patient Transport Bureau 0300 111 213
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Age UK Advice 0800 169 65 65
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Community Legal Services Advice Line 0845 345 4 345
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Adviceguide website is the main public information service of Citizens Advice Bureau
