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Research FOR Patients
An easy to understand version of the latest medical research on MDS
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Radio Day: October 25, MDS World Awareness Day. Catch-up on the stories of 4 people affected by MDS
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Suzie, diagnosed with MDS when she was 6 years old
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Adrian, husband of Emma, who was diagnosed with MDS in August 2018
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Russell Cook: “The diagnosis has given me an enormous focus, it’s made my family much closer”
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Catch up on the Cabbage Patch 10 Mile Race 2018: The Highlights
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What are the needs of patients suffering from MDS in the UK? Read the MDS UK Patient Survey Results
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In Memory of Mr Anthony Woodburn (Tony)
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Make Blood Cancer Visible: The Patient Stories
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Make Blood Cancer Visible Campaign in Edinburgh from 24 to 29 September
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Ally Boyle: a retired fire officer tells us his experience with MDS
Thursday 25th of October: MDS World Awareness Day
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Catch-up Online and listen to the brave interviews by MDS Patient on UK Radio
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Get in the register for a stem cell donation – you can be a life saver!
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Ally Boyle: What happens when a fire officer is diagnosed with MDS?
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Support Us! We are there for the patients and their families at their most difficult times
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Cabbage Patch Race and a Surprise - all for MDS Awareness Day 2018
Support, Information, Awareness & Campaigns for those affected by MDS
Upcoming Events
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Anglia MDS UK Local Patient Meeting – 19/11/2018
November 19 @ 10:30 am - 12:00 pm -
Greater London Support Group Meeting MDS-AA–AML 19/11/2018
November 19 @ 3:30 pm - 6:30 pm -
Essex MDS UK Local Patient Meeting – 04/12/18
December 4 @ 11:00 am - 1:15 pm
Take part and join the conversation:
DONATE BONE MARROW
All it takes to join the register is a bit of spit or a swab
PRINT-OUT HANDBOOK
Everything you need to know about MDS in our Patient Handbook
MDS MATERIALS AT CLINIC
Would you like to order information materials for MDS patients at your hospital?
Learn more about MDS with Our MDS Patient Handbook
Our Patient Handbook, has been written to help you understand more about MDS. Did you find the booklet helpful ? Please let us know by answering this QUESTIONNAIRE
Donate Today
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Support for the Group
The MDS UK Patient Support Group is affiliated with the UK MDS Forum, the foremost UK specialists organisation focused upon MDS, providing information and advice on the status and progress with MDS research and treatment in the UK, as well as the MDS Foundation, Inc, based in the USA. The MDS UK Patient Support Group is also supported by major pharmaceutical companies and other organisations.
The MDS UK Patient Support Group is a founding member of the MDS Alliance, the international umbrella group for all national MDS support groups. The MDS Alliance is dedicated to sharing and improving MDS information and awareness between patients, globally.MDS UK Patient Support Group is a registered charity. Reg Charity No: 1145214
Forum Latest Topics
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Facebook Posts
MDS UK Patient Support Group
3 days ago
Have you checked out the MDS Forum? ... See MoreSee Less
Forum - MDS UK Patient Support Group
mdspatientsupport.org.uk
Dear Forum users : The discussion forum is open to MDS patients, family, carers, health care professionals and anyone affected by MDS. You may freely browse the various discussion topics available within the forum as a GUEST. To join and contribute to any of the discussions, you will need to supply....MDS UK Patient Support Group
6 days ago
Just diagnosed with MDS? Here’s a few questions to ask:
How sure are you about the diagnosis of MDS?
Can you explain what MDS is? How is it different from leukemia?
Do I need any other tests before we can decide on treatment?
Do I need to see any other types of doctors?
What type of myelodysplastic syndrome do I have?
Which risk group does my MDS fall into? How might this affect my prognosis and treatment options?
Are there other factors that could affect my outlook or treatment options?
When deciding on a treatment plan:
How much experience do you have treating MDS?
What treatment choices do I have? Do we need to treat the MDS right away?
Which treatment, if any, do you recommend, and why?
Should I get a second opinion before starting treatment? Can you suggest a Center of Excellence?
What should I do to be ready for treatment?
How long will treatment last? What will it be like? Where will it be done?
What are the risks or side effects of the treatments that you recommend? How long are they likely to last?
Will treatment affect my daily activities?
What is the outlook for my survival?
During and after treatment:
Once treatment begins, you’ll need to know what to expect and what to look for. Not all of these questions may apply to you, but getting answers to the ones that do may be helpful.
How will we know if the treatment is working?
What type of follow-up will I need during and after treatment?
Is there anything I can do to help manage side effects?
What symptoms or side effects should I tell you about right away?
How can I reach a CNS or consultant on nights, holidays, or weekends?
Do I need to change what I eat during treatment?
Are there any limits on what I can do?
Should I exercise? What should I do, and how often?
Can you suggest a mental health professional I can see if I start to feel overwhelmed, depressed, or distressed?
What would my options be if the treatment isn’t working?
Where can I find more information and support?
Take a pen and paper and write your questions down! ... See MoreSee Less
MDS UK Patient Support Group
1 week ago
Latest news and update following MDS World Awareness Day ... See MoreSee Less
Thursday 25th October 2018 - MDS World Awareness Day - MDS UK Patient Support Group
mdspatientsupport.org.uk
MDS is a rare form of blood cancer Annually 2,240 patients in the UK are diagnosed with myelodysplastic syndromes (MDS) On October 25 we marked MDS World Awareness Day to raise public awareness of myelodysplastic syndromes (MDS) and its symptoms. We joined forces with UK local and national radio sta...MDS UK Patient Support Group
2 weeks ago
Joseph Vella: His experience with azacitidine and stem cell transplant at the age of 63 ... See MoreSee Less
Joseph Vella: His experience with azacitidine and stem cell transplant at the age of 63 - MDS UK Patient Support Group
mdspatientsupport.org.uk
“I hope and trust that my little story would encourage other MDS sufferers to decide to go through with the treatment. It was proved that even patients who are more than 60 yrs. old can benefit from Bone Marrow Transplant. The reduced regime used to treat me has been quite successful. It is not as...MDS UK Patient Support Group
2 weeks ago
Bergit Kulhe, MDS patient and advocate, tells us about her experience with iron chelation ... See MoreSee Less
Bergit Kulhe, MDS patient and advocate, tells us about her experience with iron chelation - MDS UK Patient Support Group
mdspatientsupport.org.uk
Following is an article by our friend and long-term MDS patient advocate from Germany, Bergit Kuhle. Bergit, together with Anita Waldmann, runs an MDS Patient Group in Germany, and both are founding members of the international MDS Alliance – the umbrella organisation for all national patient grou...Follow us in Twitter
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