Thursday 25th of October: MDS World Awareness Day

Support, Information, Awareness & Campaigns for those affected by MDS

Upcoming Events

  1. Anglia MDS UK Local Patient Meeting – 19/11/2018

    November 19 @ 10:30 am - 12:00 pm
  2. Greater London Support Group Meeting MDS-AA–AML 19/11/2018

    November 19 @ 3:30 pm - 6:30 pm
  3. Essex MDS UK Local Patient Meeting – 04/12/18

    December 4 @ 11:00 am - 1:15 pm

Take part and join the conversation:

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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!
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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

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