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MDS World Awareness Day October 25th – 2025

Posted on 25/10/2025 at 9:00 am.

Written by Kate Vahl

Feeling unusually tired, weak, or lacking energy is one of the most common signs of MDS. This fatigue is often caused by anaemia, when the body doesn’t produce enough healthy red blood cells to carry oxygen around the body.

People may experience:

Persistent tiredness even after rest or sleep
Difficulty concentrating
Dizziness or light-headedness
Muscle weakness
Pale skin

These symptoms are often mistaken for normal ageing, stress, or other conditions — but if they persist, speak to your GP and ask for a Full Blood Count to rule out MDS.

Bruising or bleeding more easily than usual can be an early warning sign of MDS. This happens when platelets — the blood cells that help with clotting — are too low (a condition called thrombocytopenia).

You may notice:

Frequent or unexplained bruises
Bleeding gums or nosebleeds
Heavy or prolonged bleeding from small cuts
Tiny red or purple spots under the skin (petechiae)

If you notice these symptoms, speak to your GP and ask for a Full Blood Count. This simple test can quickly check your platelet levels and show whether you need a referral to a haematologist.

Breathlessness and Shortness of Breath

Feeling breathless after minimal exertion — climbing stairs, walking a short distance, or even talking — can also indicate anaemia related to MDS. With fewer red blood cells, less oxygen reaches the body’s tissues, causing breathlessness even with mild activity.

People may also experience:

Heart palpitations or racing heartbeat
Chest discomfort
Feeling faint or dizzy when standing

If breathlessness seems out of proportion to your activity level or age, speak to your GP and ask for a Full Blood Count. This quick test can identify low haemoglobin levels and show whether further investigations are needed

Why raising awareness matters

MDS is still widely under-recognised, often misdiagnosed or mistaken for other conditions such as anaemia or ageing. By raising awareness, we can:

Enable earlier detection and diagnosis by helping people recognise the signs and symptoms.
Improve access to specialist care and treatment, ensuring patients are referred to the right experts sooner.
Foster understanding and compassion among the public, helping those affected feel seen, supported, and less alone.
Encourage vital research and policy change by highlighting the real experiences and unmet needs of UK patients.

Every conversation, share, or donation helps bring us closer to better care and improved outcomes for everyone living with MDS.

About MDS UK Patient Support Group

We are the only UK-based charity dedicated solely to informing, supporting, and empowering people affected by MDS.

We:

Provide online support meetings, a telephone helpline, and clear information for patients and families.
Campaign for better access to treatments and improved quality of life for everyone living with MDS.
Work alongside clinicians and researchers to promote awareness and understanding of these rare blood cancers.

As a small charity, we rely on the kindness of supporters like you. Every donation helps us keep running costs low and ensures your support goes directly to patients, research, and advocacy.

MDS UK Christmas and holiday opening hours

Posted on 17/10/2025 at 5:41 pm.

Written by Kate Vahl

Groundbreaking research: is the bone marrow environment key in Myelodysplastic Syndromes?

Posted on 05/10/2025 at 6:58 pm.

Written by Kate Vahl

Further information and resources from MDS UK

To learn more about MDS and access trusted support, explore the further information and resources MDS UK offers

You can download our comprehensive MDS Patient Guide for clear, reliable information about living with MDS and understanding your diagnosis.
Find out how MDS is treated and what options might be right for you on our MDS Treatments page
You don’t have to face MDS alone — explore our Support section for practical advice and emotional support via our support line and virtual meetings.

Great North Run 2025 – Congratulations Team MDS UK!

Posted on 02/10/2025 at 11:15 am.

Written by Kate Vahl

Write your will for free this October with MDS UK

Posted on 30/09/2025 at 3:50 pm.

Written by Kate Vahl

A Christmas message from our CEO and Chair of Trustees at MDS UK

Posted on 16/09/2025 at 5:16 pm.

Written by Kate Vahl

As we move into the new year, my focus will be on shaping a clear plan to expand and realign our support services with what matters most to patients and families. Our overriding aim is to improve quality of life for anyone affected by MDS, whether you are a patient, a family member, a caregiver, or have lost someone to the disease. We will take our time over this, as we want to ensure every step meets the needs of our community. One initiative I am excited to introduce is a Patient and Carer Representative Group, which will help us keep your voices at the heart of what we do. I look forward to sharing more details soon.

Support Joe Thomas: Swimming the Channel for MDS UK!

Posted on 10/09/2025 at 10:11 am.

Written by Kate Vahl

Why Joe is swimming the Channel for MDS UK

Joe’s dad, Pete, was diagnosed with MDS in 2022, and since then the family has been supported by MDS UK.

"Thankfully, our family has had incredible support from MDS UK, an extraordinary charity that provides invaluable help to patients like my dad."

Looking for ways to support MDS UK, Joe has taken on challenges that push his body and mind to the limit.

“Any donation, big or small, will make a real difference,” says Joe. “It will help other MDS patients get the support they need when they receive a life-changing diagnosis.”

Add a Robin to Our Memory Tree for Christmas

Posted on 05/09/2025 at 2:13 pm.

Written by Kate Vahl

MDS, CMML and the newly published NHS 10-Year Health Plan

Posted on 07/08/2025 at 1:00 pm.

Written by Kate Vahl

NHS 10 Year Health Plan: : What it means for MDS/CMML patients and rare blood cancers

Subtitled ‘Fit For The Future’, the NHS 10 Year Plan focuses on three key shifts in healthcare delivery over the next decade:

Hospital to community: wherever possible, shifting care from being hospital-based to community or home based.

Analogue to digital: through improved IT, easy-to-use apps and the increased use of AI, reduce the NHS’s administrative burden and risk of delays or errors in communication.

Treatment to prevention: improve outcomes and overall health, and reduce the strain on NHS services, by preventing as much serious illness as possible.

MDS UK Patient Support Group and the NHS 10 Year Health Plan

MDS UK welcomes the plan and is pleased to have been included in the consultation process. It is punchy, ambitious and includes some very bold targets, such as:

The eradication of cervical cancer by 2040
The implementation of single patient records (thereby reducing the need to retell your story each time you are treated somewhere different).
A strong focus on reducing healthcare inequality and improving access to treatments

Inequality in MDS care must be addressed

However, for those living with Myelodysplastic Syndromes (MDS) and CMML (Chronic Myelomonocytic Leukaemia), inequality in care is still a major issue.

We see inequality not only in socio-economic and ethnic minority contexts, but also:

When speaking to older patients who feel they’ve been ‘written off’ because of their age, which we see as unacceptable and unethical.
We see inequality in the lack of psychological support for those not yet at the stage of needing treatment, but who are living with the threat of the disease developing - we feel that no person should be readily dismissed straight after being given a very frightening, life-limiting diagnosis just because no treatment is needed at that point.
We see it when MDS is described as ‘an old person’s disease’, when we speak to a lot of people diagnosed in their fifties and sixties who are still working, juggling families, elderly relatives and a busy schedule, and without the means to retire early.
We see first-line treatments, readily available to MDS patients in other parts of the world, being denied to patients in the UK
In the lack of investment into finding new treatments for MDS, despite an increasing call for it from forward-thinking and caring clinicians.

MDS UK will continue to speak out, raise awareness, and push for change—because every patient deserves the best possible care, no matter their age, background or location.

EHA 2025 Conference highlights

Posted on 06/08/2025 at 12:26 pm.

Written by Kate Vahl

Key takeaways from EHA 2025:

1 - Artifical intelligence used in blood cancer research and care

An exciting development is the use of artificial intelligence (AI) in blood cancer research and care. AI will increasingly be used to:

collect, analyse and track patient data

help diagnose complex conditions like MDS, MPNs and CMML more quickly and accurately

This will help design more targeted and individualised treatments, and illustrates how AI is an exciting step forward in research and drug development.

2 - New treatments for MDS on the horizon

There’s a strong appetite in the MDS community to find new treatments for patients.

Luspatercept, which has been a first-line treatment for a number of years in the US, Canada, and Europe, is already licensed in the UK for the treatment of certain MDS sub-types but is not yet funded by the NHS. This is hugely frustrating – the reasons are multi-layered with several different organisations involved at various stages. Progress is being made, albeit slowly.

However, more encouraging is the news that newer drugs like Imetelstat and Elritercept, which have shown good results in clinical trials, are now being fast-tracked for approval in Europe. This will bring them a step closer to being available in the UK.  The need for more effective, accessible treatments for MDS remains urgent. We're committed to keeping this issue firmly on the UK blood cancer policy agenda.

In summary

There is a big push in the haematology community to develop new treatments for MDS, MPNs and AML. With the help of AI, research is moving forward quickly in immunotherapy, genomics and in improving quality of life for patients - while a search for a cure continues. Encouragingly there are some promising new treatments already on the horizon.

At MDS UK, amplifying the voice of MDS patients within the broader blood cancer community—both in the UK and internationally—is a key part of our mission.

We serve on the steering committee of the MDS Global Alliance, and are active members of the MDS Foundation, the UK Blood Cancer Alliance, and Cancer52. We will continue to advocate for, and wherever possible financially support, research into MDS and will keep pushing to ensure MDS patients in the UK benefit from the latest research and emerging therapies, both now and in the future.

Every year on October 25, we join the global MDS community to mark MDS World Awareness Day — a day dedicated to raising awareness of myelodysplastic syndromes (MDS), a rare blood cancer that often goes unrecognised.

Spot the Symptoms - #BrusingBleedingFatigue

Fatigue and Anaemia

Feeling unusually tired, weak, or lacking energy is one of the most common signs of MDS. This fatigue is often caused by anaemia, when the body doesn’t produce enough healthy red blood cells to carry oxygen around the body.

People may experience:

Persistent tiredness even after rest or sleep

Difficulty concentrating

Dizziness or light-headedness

Muscle weakness

Pale skin

These symptoms are often mistaken for normal ageing, stress, or other conditions — but if they persist, speak to your GP and ask for a Full Blood Count to rule out MDS.

Easy Bruising and Bleeding

Bruising or bleeding more easily than usual can be an early warning sign of MDS. This happens when platelets — the blood cells that help with clotting — are too low (a condition called thrombocytopenia).

You may notice:

Frequent or unexplained bruises

Bleeding gums or nosebleeds

Heavy or prolonged bleeding from small cuts

Tiny red or purple spots under the skin (petechiae)

If you notice these symptoms, speak to your GP and ask for a Full Blood Count. This simple test can quickly check your platelet levels and show whether you need a referral to a haematologist.

Breathlessness and Shortness of Breath

Feeling breathless after minimal exertion — climbing stairs, walking a short distance, or even talking — can also indicate anaemia related to MDS. With fewer red blood cells, less oxygen reaches the body’s tissues, causing breathlessness even with mild activity.

People may also experience:

Heart palpitations or racing heartbeat

Chest discomfort

Feeling faint or dizzy when standing

If breathlessness seems out of proportion to your activity level or age, speak to your GP and ask for a Full Blood Count. This quick test can identify low haemoglobin levels and show whether further investigations are needed

If you spot the symptoms, ask your GP for a Full Blood Count.

A Full Blood Count (FBC) is a simple blood test your GP can arrange to check for signs of MDS. It’s a routine test that measures red and white blood cells and platelets, and can quickly show whether further investigation into MDS is needed.

Why raising awareness matters

MDS is still widely under-recognised, often misdiagnosed or mistaken for other conditions such as anaemia or ageing. By raising awareness, we can:

Enable earlier detection and diagnosis by helping people recognise the signs and symptoms.

Improve access to specialist care and treatment, ensuring patients are referred to the right experts sooner.

Foster understanding and compassion among the public, helping those affected feel seen, supported, and less alone.

Encourage vital research and policy change by highlighting the real experiences and unmet needs of UK patients.

Every conversation, share, or donation helps bring us closer to better care and improved outcomes for everyone living with MDS.

About MDS UK Patient Support Group

Support line and email response over Christmas

Support line will close: 5pm, Tuesday 23 December

Reopens: Monday 5 January 2026

Email: During this time, we will respond to urgent emails only. Responses may be slower than usual. If your message is urgent, please include “Urgent” in the subject line.

Email address: info@mdspatientsupport.org.uk

If you need support while we are closed

If you are feeling overwhelmed or need immediate help while our support line is closed, you may wish to contact your GP, NHS 111, or local emergency services. If you are in immediate danger, please call 999.

From Mon 5 January 2026, MDS UK will return to our usual hours

Our support line will be open from Monday January 5th 2026, Monday to Friday, 9am–5pm on 020 7733 7558, and you can also email us at info@mdspatientsupport.org.uk.

Warm wishes

Dr Blossom Bell, PhD - CEO MDS UK Patient Support Group

We were delighted to welcome Dr Syed Mian, Senior Research Fellow at the Francis Crick Institute in London, to our online support meeting on September 9th 2025.

Dr Mian presented;

his proposal to conduct new research into the role the bone marrow environment plays in the development of MDS stem cells.

The study would also investigate what it is that causes healthy blood stem cells in the bone marrow of MDS patients to effectively become dormant, and how these healthy cells could be reactivated.

To learn more about this potentially groundbreaking project watch the recording of Dr Mian’s presentation below.

Watch the presentation

"Is the bone marrow environment key in Myelodysplastic Syndromes?"

(Recorded at the MDS UK online support meeting, September 2025)

About Dr Syed Mian

How you can you help

Further information and resources from MDS UK

To learn more about MDS and access trusted support, explore the further information and resources MDS UK offers

You can download our comprehensive MDS Patient Guide for clear, reliable information about living with MDS and understanding your diagnosis.

Find out how MDS is treated and what options might be right for you on our MDS Treatments page

You don’t have to face MDS alone — explore our Support section for practical advice and emotional support via our support line and virtual meetings.

This year’s Great North Run attracted the highest number of runners ever. In the words of GNR founder Sir Brendan Foster,

‘the North East turned out in force to provide simply the greatest support you’ll see anywhere in the world – the sun was shining in Newcastle and the Red Arrows were roaring overhead. What more could we ask for?’

Our sincere thanks and congratulations go to those who ran for MDS UK this year.

Great North Run 2025 MDS UK Runners

Kirsty Graham and Meghan Yarnold

Kirsty shared,

“My dad was diagnosed with MDS last year, so it is a cause close to my heart.”

Together with Megan, she completed the Great North Run with strength and determination, smiling from start to finish.

Inspired to take part in the Great North Run 2026?

We’d love you on Team MDS UK –Sign up to register your interest (Registering your interest isn’t a commitment — it just lets us know you’d like to find out more.)

Victoria and Jamie Price

Thank you to all of our amazing 2025 GNR runners!

A huge thank you to Kirsty and Megan, Victoria and Jamie, and also Kriss Marco and Amanda Young, who all proudly took to the streets of Newcastle to run the Great North Run for MDS UK.

Your dedication, energy and fundraising make a genuine difference. We will make sure every pound raised is spent supporting those affected by MDS.

Want to take part in next year's Great North Run?

We’d love you on Team MDS UK for the Great North Run 2026 –Sign up to register your interest. (Registering your interest isn’t a commitment — it just lets us know you’d like to find out more.)

Free Wills Month runs every March and October, and gives people the chance to write or update a simple will for free with participating UK solicitors. There’s no pressure to leave a gift to charity, but many choose to, helping fund vital work.

Free Wills Month MDS UK