Living 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)

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.

Blood cancer: supporting mind and body

Surabhi Chaturvedi, Psychotherapist at King’s College Hospital NHS Foundation Trust’s Haematology Department, blogs about the emotional impact of being diagnosed with a blood cancer and the importance of supporting people’s mental wellbeing throughout the course of their illness.

Read the article

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.

Download PDF

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.

Download PDF

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

 

Download PDF

The Neutropenic Diet by Natasha Jones

Natasha Jones Specialist Dietitian – Haematology & Palliative Care

 

Download PDF

Dealing with Fatigue

Fatigue Factsheet: Effects &self-management tips

Fatigue factsheet for Myelodysplastic Syndrome (MDS) Patients

Download PDF

Practical Advice

Travel: Advice and Insurance

This factsheet is waiting revision due to Brexit

Download PDF

Quality of Life Questionnaire

You can use this questionnaire to assess how you are coping with aspects of MDS and to what extent the condition affects you. Bring it to your doctor to help discuss your care. You might find it helpful to fill this out at every consultation to notice any positive or negative changes in time – and share it with clinical staff.

This questionnaire has been developed and validated by an MDS specialist and is being used in many European countries for the purpose of assessing Quality of Life in MDS patients specifically.

If you are using this questionnaire, and are happy to share your responses with us, please post or email your completed questionnaires to us – as this will help with information we collect on Quality of Life data.

All questionnaires will be anonymous.

Download PDF

Useful Links

 
  • Macmillan Benefits National Helpline 0800 500 800 (we recommend calling this helpline first)
  • Disability Living Allowance & Attendance Allowance 0845 7123 456
  • Employment Support Allowance 0800 055 66 88
  • Carers Allowance 0845 608 4321
  • Patient Transport Bureau 0300 111 213
  • Age UK Advice 0800 169 65 65
  • Community Legal Services Advice Line 0845 345 4 345
  • Adviceguide website is the main public information service of Citizens Advice Bureau
  • Community Legal Service provide and promote civil legal aid services:

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