This is the specialist haematologist Forum which was established some six years ago with the remit to increase the awareness of MDS through education, setting up regional MDS registries and increasing the recruitment of MDS patients to National and International trials throughout the UK.
This is the new patient information material produced by the international MDS Foundation.
This information contained in this booklet is destined to patients in the USA, but a lot of it is applicable to patients in the UK.
This is the standard MDS Patient book for newly diagnosed MDS patients, their families and friends. It also contains information on iron overload.
A version in German is also available.
MDS UK will soon issue an adapted version for the UK.
This is a global and worldwide MDS awareness project looking at many aspects of MDS, including ageism in the treatment of this condition. It states the point that all patients, regardless of age should be offered the same high standard of care and must have access to the same treatment options.
Please check the website and read the stories from patients all over the world.
This is an awareness campaign now led by the MDS Alliance, a coalition of world-wide patient groups.
In September 2013, it was decided to make this a formal alliance.
More news will follow in early 2014.
This is a new booklet published by the EMHF (European Men’s Health Forum) destined to recently diagnosed MDS patients, their family and friends. As this is a brand new publication, we need your feedback – do you find it useful, anything you particularly like or dislike? Please email us your comments on firstname.lastname@example.org
This booklet is available in addition to the standard MDS Foundation booklet.
The essential handbook for patients considering or preparing for a bone
marrow transplant – or stem cell transplant – Seven Steps – written by Michelle Kenyon, the post-transplant nurse specialist at King’s College Hospital.
This is the follow-up handbook – for long term recovery after a stem cell transplant.
Download from the LLR site – or order your paper copy from them.
This is a website regarding Iron Overload. It contains information for highly transfused MDS UK patients at risk of iron overload. This website has been developed with help of specialist nurses. There are general sections on MDS, but also some specific sections around blood transfusions and iron overload/iron toxicity.
MDS Transplant blogs
Very useful if you want to know what happens in detail when you have a stem cell transplant.
Including what to pack, what to potentially expect.
Do remember that every patient is different though – so your experience may differ a little from theirs.
All 3 quite different in style – but all helpful and well written.
Thanks to all 3 individuals for maintaining the sites and for carrying on writing.
Leukaemia Research is the only charity in the UK dedicated exclusively to researching blood cancers and disorders including leukaemia, Hodgkin’s and other lymphomas, and myeloma.
Leukaemia CARE exists to provide vital care and support to all those whose lives have been affected by leukaemia, lymphoma, myeloma and the allied blood disorders. Our work extends to the welfare of families and carers, as well as that of patients themselves. Quite simply…’supporting a quality of life for all’
This is the other bone marrow registry operating in the UK and abroad.
They take donors aged between 18 and 55.
Pre-registration is possible from the age of 17.
Macmillan Cancer Support improves the lives of people affected by cancer. They provide practical, medical, emotional and financial support and campaign for better cancer care.
They also provide an excellent confidential Benefits Helpline, should you need financial assistance with dealing with your MDS.
You could help save lives by registering with the British Bone Marrow Registry. BMR is a division of the National Blood Transfusion Service working in co-operation with other UK bone marrow / blood donor registries and the NHS Cord Blood Bank. Stem cell donations from cord blood can be made at specialist hospitals within the NHS. More information at www.nhscordblood.co.uk.
NICE is an independent organisation responsible for providing national guidance on promoting good health and preventing and treating ill health. They are responsible for checking the cost-effectiveness of drugs for the NHS.
You may be the unique match for a patient with terminal leukaemia. Sharing your immune system could save their life.
Public figures with MDS
Astrophysicist Carl Sagan, writers Susan Sontag and Nora Ephron, writer Roald Dahl, actor Larry Hagman – and Good Morning America host Robin Roberts, amongst the wider known ones.
Another fantastic source of reliable information about many aspects of MDS as well as latest research results of trials. Different patient and physician columns.
If you are looking for a counselor or a therapist to help you cope better with the diagnosis of MDS – or any other aspect of living with a life-threatening condition. Talking through issues with a professional counselor can be very helpful. This is a directory of private counselors and therapists that may help you or someone in your family. If you are seeking such help, always check with your hospital first – as they may offer counseling free of charge. Do make sure to ask whether the person has experience of dealing with cancer issues.
If you have used this counseling directory, please let us know if you found it helpful. We are listing this website for a trial period.
The Grove is the UK’s only hotel of its kind exclusively for use by sufferers of Cancer and other life-limiting illnesses situated in a quiet leafy corner of Bournemouth – the idyllic setting for an escape and a well-deserved break. All of this secure in the knowledge that there is a nurse on duty 24/7 for advice and support. The Grove is non-profit making as it is owned and operated by the Macmillan Caring Locally charity supporting people suffering from cancer and other life threatening illnesses, their families, carers and friends. Please note that ‘Macmillan Caring Locally’ is an independent Charity, it is not connected in any way to the national Charity Macmillan Cancer Support.
Epidemiology website for blood disorders including MDS
Fascinating and very useful research and epidemiology website of the HMRN:
Haematological Malignancy Research Network (HMRN) was established in 2004 to provide robust generalizable data to inform clinical practice and research. It is a collaboration between researchers in the Epidemiology & Statistics Group (ECSG) at the University of York, a unified Clinical Network operating across 14 hospitals, and an integrated Haematological Malignancy Diagnostic Service (HMDS) at St James’s Hospital in Leeds.
Provides specific data on MDS: https://www.hmrn.org/