Myelodysplastic syndromes (MDS)
Taking in information can be difficult, especially when you have just been diagnosed. Make a list of questions before you see your doctor. Take someone with you to remind you what you want to ask and help remember the answers. You can ask for written information.
Ask your doctors and nurses to explain things again if you need them to.
Remember that you don’t have to sort everything out at once. It might take some time to deal with each issue. Ask for help if you need it.
The symptoms of MDS often mean that you feel less able to do everyday things. Talk to your doctor or nurse about any symptoms you have. There may be supportive treatments that can help you.
You may also feel better if you:
eat a healthy, well balanced diet
do some gentle exercise - after checking with your doctor
rest when you are tired
Try to work out your priorities each day if you get tired easily. Talk to your family and friends and ask for any help you need. You can find tips about coping with tiredness in the section about fatigue and cancer.
Go to information on cancer and fatigue
Talking to your friends and relatives about your MDS can help. But some people worry about the emotions this could bring up and won’t want to talk. They might worry that you won't be able to cope with your situation.
It can strain relationships if your family or friends don't want to talk. But talking can help increase trust and support between you and them.
Help your family and friends by letting them know if you would like to talk about what’s happening and how you feel.
There are organisations that also offer help and support.
MDS UK Patient Support Group aims to increase awareness of MDS and offer support and information to patients and families. They campaign to increase the quality of life and make treatments available to those affected by myelodysplastic syndromes.
Telephone: 020 7733 7558 Email: info@mdspatientsupport.org.uk
MDS UK Patient Support Group offers NHS online video consultations with Professor David Bowen. He is an MDS Specialist from the MDS Centre of Excellence in Leeds.
The consultations are usually available on Wednesdays.
Find out more about arranging a video consultation on the MDS UK Patient Support Group website.
Visit the MDS UK Patient Support Group website
The MDS Foundation is a USA based organisation. It was set up by an international group of doctors and researchers. They aim to share good practice and promote research into MDS. They host an international information network. You can find patient information about MDS on their website.
Leukaemia Care is a national blood cancer support charity, committed to ensuring that anyone affected by blood cancer receives the right information, advice and support.
It provides a range of support services to patients and their carers, including information, support groups, patient and carer conferences, and buddy support. The buddy support service is available if you want to chat to someone who has had a similar experience.
Freephone helpline: 08088 010 444, open Monday to Friday 9am to 4:30pm
Chat via WhatsApp on 07500068065
Blood Cancer UK funds research, provides information and support to those affected by blood cancer. They publish information booklets and you can also connect and share experiences with other people dealing with blood cancer.
Support line: 0808 2080 888
Support line opening hours are:
10 am to 4pm on Monday, Wednesday, Thursday and Friday
10 am to 7pm on Tuesday
10 am to 1 pm on Saturdays and bank holidays
Email address: support@bloodcancer.org.uk
Find out more on the Blood Cancer UK website
It can help to talk to other people with cancer. You can look at Cancer Research UK’s discussion forum - Cancer Chat. It is a place to share experiences, stories and information with other people who know what you are going through.
For support and information, you can call the Cancer Research UK information nurses on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday. They can give advice about who can help you and what kind of support is available.
You can also use the Ask our nurses a question form on the Cancer Research UK website.
Last reviewed: 10 Nov 2023
Next review due: 10 Nov 2026
Myelodysplastic syndromes are also called myelodysplasia or MDS. In MDS the bone marrow doesn’t work properly and produces abnormal blood cells. This can lead to problems such as anaemia, bleeding or infections.
The main tests for MDS are blood and bone marrow tests. You may not need any treatment at first. Treatment for MDS includes chemotherapy and other supportive treatments to control your symptoms.
AML starts from young white blood cells called granulocytes or monocytes in the bone marrow. Find out about symptoms, how it is diagnosed and treated, and how to cope.
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