MDS Patients Forum

What to post where and general usage details, please read before posting

Please post here your experiences of MDS as a patient, carer, family or friend

Comments, thoughts and issues on any other aspects of MDS - not covered by other folders - PLEASE CHECK before you post in this folder.

Post here to make contact with others in specific regions of the UK.

Post here for ANY bone marrow transplant related issues

Posts related to the sub-type 5q deletion

Please share your experience of using this particular MDS drug - sometimes referred to as "chemotherapy". If you have general questions about azacitidine, please check our website, our Patient Handbook or call us. For personal clinical queries - always discuss with your haematologist or nurse.

This folder is purely for messages related to general transfusion issues, as well as iron overload & iron chelation treatment due to those frequent red blood cell transfusions.

Know your MDS mutations! Talk about and share info on research and diagnostic methods in MDS. Gene Mutations Analysis is fast becoming an important predictor for severity and prognosis of MDS sub-types. Share if you know your mutation.

Folder for messages about the potential link between auto-immune disease and MDS. Post about your personal experience with auto-immune diseases - such as chronic joint inflammation, low platelet counts of unknown cause, blood vessel inflammation, muscle pain in hips or shoulders, artery inflammation, or psoriasis.

MDS can affect children in some very rare cases. Please post here if you are a parent of a child with MDS.

For information about insurance companies able to offer coverage to those with pre-existing medical conditions - such as MDS. And new folder about Health or Life Insurance issues.

This is a folder for MDS patients and carers wishing to share their own personal experience regarding nutrition and the use of different supplements to help with general health.
MDS UK does NOT endorse or recommend any products that may be mentioned here.
MDS UK strongly advises to ALWAYS consult your clinical team before taking ANY supplements.

Details of upcoming events and fundraisers. Please add your own post - and update us about your great challenges. Thank you!

Get in touch with others attending the Forum - ahead of time and keep in touch afterwards.

We are extending our network to Ireland and N Ireland and aim to create a specific support network for MDS patients and carers there. Please register your interest - and use this platform to communicate.

A place to advertise your regional meetings, get togethers, formal or informal - so that others can find you - and you can post updates.

Please post any useful / relevant links here for possible inclusion on the main website

Please post any problems you find in using the forum here

Any ideas, thoughts, contributions for inclusion on the website