Dealing with Myelodysplastic Syndrome (MDS)

The impact of having MDS can be significant, affecting both your body and your emotional state.

Here we will go through some of the 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.

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 you might find that many of the emotions they experience are familiar to you.

Your healthcare team is there to help you with your feelings, as well as your physical needs. Talk to them if you feel you need support. You can also share your feelings in our MDS UK forum and find people who have faced similar issues.

Patient Handbook

Understanding Myelodysplastic Syndromes

This booklet has been written to help you understand more about MDS. Learn more about MDS, and the feelings you might go through in Chapter 8. It also provides advice on how to deal with certain issues, such as sexuality in Chapter 9 and provides useful references in Chapter 10.

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Coping with Emotions

Making Adjustments

Diet and Nutrition

Nutrition Information and advice & neutropenic diets

Factsheet for Myelodysplastic Syndrome (MDS) Patients

 

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The Neutropenic Diet by Natasha Jones

Natasha Jones Specialist Dietitian – Haematology & Palliative Care

 

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Dealing with Fatigue

Fatigue Factsheet: Effects &self-management tips

Fatigue factsheet for Myelodysplastic Syndrome (MDS) Patients

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Practical Advice

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.

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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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