Patient Stories

Kevin’s Story: at 70, with MDS, and an avid adventure cyclist

I was diagnosed with MDS in 2013 at the age of 64, after 18 months of various tests and investigations. I remember feeling relief...
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Kevin’s Story: at 70, with MDS, and an avid adventure cyclist

Kes Grant tells us how it feels to live with MDS

"I have lived with blood cancer (MDS) for 19 years, officially, being diagnosed in 2000, but I had test to query it a couple...
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Kes Grant tells us how it feels to live with MDS

Fiona Cherry MDS story: My journey to a diagnosis

In 2017 at the age of 38, I was diagnosed with Familial MDS. It came as a bit of shock and took me a...
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Fiona Cherry MDS story: My journey to a diagnosis

Rebecca’s Story: Three Years after her Bone Marrow Transplant

In 2015 I walked into a consultants room expecting some new prescription or the ‘we don't know’ I had been hearing for past seven...
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Rebecca’s Story: Three Years after her Bone Marrow Transplant
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MDS GLOSSARY

A handy A-Z list of words
MATERIALS AT YOUR CLINIC

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Giving Support and Information to MDS Patients and their Families

MDS UK Patient Support Group is a Registered Charity No 1145214 - Contact Us!

Learn more about MDS with Our Patient Handbook: New edition

Our Patient Handbook, has been written to help you understand more about MDS
Download and Print

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Research For Patients

Chemotherapy at home: less visits to the hospital and better quality of life

Chemotherapy at home: less visits to the hospital and better quality of life

19/09/2019
ACE-536-MDS-002 (Luspatercept)

ACE-536-MDS-002 (Luspatercept)

16/09/2019
FG-4592-082 (Roxadustat) Clinical Trial Open to Recruitment

FG-4592-082 (Roxadustat) Clinical Trial Open to Recruitment

16/09/2019
Familial/inherited MDS: rare but important to keep in mind

Familial/inherited MDS: rare but important to keep in mind

21/08/2019
Precision medicine is coming to the clinic to treat MDS

Precision medicine is coming to the clinic to treat MDS

24/07/2019
Harmony: a European project with good news for MDS patients

Harmony: a European project with good news for MDS patients

10/07/2019
The new generation of MDS diagnostics: the Myeloid Gene Panel

The new generation of MDS diagnostics: the Myeloid Gene Panel

20/06/2019
New service for patients: online video consultations with an MDS specialist

New service for patients: online video consultations with an MDS specialist

14/06/2019
Prof Bowen talks about the results of MDS Right, a European study on MDS patients

Prof Bowen talks about the results of MDS Right, a European study on MDS patients

11/06/2019
No other interest can take precedence: a patient’s perspective on oncology drug development

No other interest can take precedence: a patient’s perspective on oncology drug development

04/06/2019
Vidaza / Azacitidine: Know more about this drug

Vidaza / Azacitidine: Know more about this drug

20/03/2019
What is CAR-T cell therapy? Learn how this immunotherapy works in blood cancer

What is CAR-T cell therapy? Learn how this immunotherapy works in blood cancer

10/03/2019
MEDI4736: Clinical Trial Open to Recruitment

MEDI4736: Clinical Trial Open to Recruitment

16/01/2019
How is Quality of Life in patients with Myelodysplastic Syndromes (MDS) measured?

How is Quality of Life in patients with Myelodysplastic Syndromes (MDS) measured?

25/12/2018
How does Myelodysplastic Syndrome and its treatment impact on the Quality of Life of patients?

How does Myelodysplastic Syndrome and its treatment impact on the Quality of Life of patients?

17/12/2018
Vitamin C can help to correct a basic MDS problem: blood cells failing to differentiate properly

Vitamin C can help to correct a basic MDS problem: blood cells failing to differentiate properly

25/11/2018
The European MDS Registry: learning about the ‘real’ MDS patients

The European MDS Registry: learning about the ‘real’ MDS patients

22/11/2018
What are the needs of patients suffering from MDS in the UK? Read the MDS UK Patient Survey Results

What are the needs of patients suffering from MDS in the UK? Read the MDS UK Patient Survey Results

15/10/2018
EPO (Erythropoietin) & other Erythropoiesis Stimulating Agents (ESAs) in the Treatment of MDS

EPO (Erythropoietin) & other Erythropoiesis Stimulating Agents (ESAs) in the Treatment of MDS

21/06/2018
MDS Treatment: Prof. David Bowen talks about genetics, where we are now and where we’re heading

MDS Treatment: Prof. David Bowen talks about genetics, where we are now and where we’re heading

05/04/2018

Medical Support for Our Charity

MDS UK Patient Support Group is affiliated with the UK MDS Forum, the foremost UK medical organisation focused upon Myelodysplastic Syndromes, providing information and advice on the status and progress of the disease research and treatment in the UK, as well as the MDS Foundation, Inc, based in the USA.

MDS UK Patient Support Group is also supported by major pharmaceutical companies and other organisations.

MDS UK Patient Support Group is a founding member of the MDS Alliance, the international umbrella group for all national support groups. The MDS Alliance is dedicated to sharing and improving information and awareness between patients, globally.

MDS UK Patient Support Group is a registered charity. Reg Charity No: 1145214

Prefer to speak on the phone? Call our helpline for an initial chat 02077337558

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