Newly-diagnosed with MDS/CMML? See our Quick Links guide
We recently held a meeting for newly-diagnosed patients and/or those new to MDS UK, for which we produced a ‘quick links’ list.
Our website is packed full of useful information and resources, but we appreciate that, as someone new to MDS or CMML, there is a lot to take in.
Photo by Kampus Production
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.
(If you'd prefer, you can download the list as a pdf document from here > Quick Links Guide for the newly-diagnosed.pdf)
MDS : general information
- MDS Patient Handbook
- What is MDS?
- Different types of MDS
- MDS Risk Scoring
- MDS Symptoms
- MDS Diagnosis
- Treatment of MDS
- Living with MDS
- 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)
- 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 Centres of Excellence
- 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