Newly diagnosed with MDS/CMML?
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For most people, getting a diagnosis of MDS or CMML will have come as a shock. It can bring major changes to your life, and there’s a lot to process. The list of links below will help you quickly find the most important information on our site. We understand how overwhelming it can feel when you're newly diagnosed, and we hope these resources offer the support and guidance you need.
(We also run regular online Support Meetings, including some just for newly diagnosed people, so have a look at the upcoming schedule to see if there’s a meeting available soon.)
See our Quick links guide
The links below take you straight to the pages, articles and videos on our website that we believe are the most useful in those early days following diagnosis.
MDS : general information
- Guide for people affected by Myelodysplastic Syndromes (MDS)
- What is MDS?
- Different types of MDS
- MDS Risk Scoring
- MDS Symptoms
- MDS Diagnosis
- Treatment of MDS
- Living with MDS
- Coping with a diagnosis of MDS / CMML:Video presentation
- Glossary of terms
- Booklets and factsheets
This page includes the handbook, managing fatigue, nutrition (including neutropenic diet), stem cell transplant, EPO and GCSF, clinical trials, travel advice and insurance.
CMML : general information
Video presentations by guest speakers
- CMML diagnosis and treatment (Dr Dan Wiseman)
- Low risk MDS (Dr Dominic Culligan)
- Stem cell transplants (Dr Victoria Potter)
- Latest developments in stem cell transplantation (Dr Beth Payne)
- REPAIR MDS Clinical Trial (Trial team)
- Latest developments in treatments for MDS (July 2023 - Dr Beth Payne)
- Research on Quality of Life in high risk MDS (Dr Pramila Krishnamurthy and others)
- Lifestyle medicine (Dr Shireen Kassam)
Useful info when seeing a specialist
- List of MDS and CMML specialists and Specialist Centres
- Questions to ask your healthcare team about your MDS/CMML
Where to find peer-to-peer support
What people say about the MDS Patient Support Group
"Getting in touch with the MDS Patient Support Group is proving to be one of the most reassuring (and helpful) things we have done so far since my Dad was diagnosed."
“I’m really glad I have connected with the MDS Support Group and am so thankful for all you do.”
"I have been to only 2 patient meetings so far and found them both very helpful. Meeting other MDS patients and sharing experiences with them has made a great difference to the way in which I deal with my own MDS and put my own current medical position in perspective." Read more testimonials
