this is archive.php

Make Blood Cancer Visible: The Patient Stories

Why are we campaigning to Make Blood Cancer Visible?

September is blood cancer awareness month and we are working together to #MakeBloodCancerVisible.

Blood cancer affects 240,000 adults and children in the UK and claims more lives each year than either breast or prostate cancer. Yet, blood cancer does not get the priority and recognition it deserves. (See full information article in Bloodwise)

During September, we are calling on governments in the UK to make blood cancer a priority, starting with clear long-term commitments in their next cancer plan.

Make Blood Cancer Visible - The Patients Stories

Help us Campaign to Make Blood Cancer - and Myelodysplastic Syndromes - Visible

For MDS in particular, and other rare forms of blood cancer, the campaign helps to make them known among the general public, so that MDS patients and carers, as well as doctors and nurses get to know the disease and its effects better.

The Make Blood Cancer Visible installation, in Edinburgh this weekend, features 10 life-sized transparent figures, which represent the ‘unseen’ or invisible nature of blood cancer, and engages passers-by while encouraging them to show their support for the campaign.

Each of the figures shares the individual experience of those living with blood cancer through audio stories, making them seen and heard.

The following slideshows, showing images, audio files and quotes, and the Audio Stories try to capture the spirit of the installation.

Please share them on Facebook and Twitter, send emails and messages to your friends and family and help us #MakeBloodCancerVisible this September and onwards.

Make Blood Cancer Visible - September 2018

We thank Janssen UK for sponsoring this work and making this awareness campaign possible. Without their help and organization, this type of work would not have been possible.


Make Blood Cancer Visible Campaign in Edinburgh from 24 to 29 September

Mon 24th - Sat 29th Sept: Waverly Mall, Edinburgh, EH1 1BQ

“This last week of September 2018, the Make Blood Cancer Visible campaign has moved to Edinburgh, to highlight the need for better blood cancer awareness in Scotland specifically.

Read More


Make Blood Cancer Visible 2018 coverage from Manchester

“The Make Blood Cancer Visible campaign, this week was set up in Manchester From the 17th – 22th Sept

Make Blood Cancer Visible 2018 Installation

The pharmaceutical company Janssen has put together an amazing installation of transparent, motion-activated human figures which creatively represent the ‘unseen’ or invisible nature of blood cancer. The figures share real-life stories from people with blood cancer, in their own voices, encouraging passers-by to listen to their experiences and to show their support for the campaign.

Hear below the voices of real patients, taken from the audio on the exhibits:

Sandy: Blood cancer is very hard, I find it hard to describe both to myself and to my friends and family.

Carmen: I look okay to the outside world, but in the inside my body is trying to kill me. Just because I look good today and I feel fine doesn’t mean I'm okay.

Debbie: I avoided going to the doctors. I'd got the symptoms and I knew there was something wrong, I just put it off.

Claudia: Even now nine years later, the enormity of a very uncertain future can be quite overwhelming.

Debbie: I always thought I was a strong person anyway, but I think now I really know what strong is.

Carmen: And I think our bodies are really powerful. In some way they will find, if you're really lucky, a way of regenerating, so I'm really lucky that I'm in remission now.

Debbie: I discovered that the more I shared the better I felt.

Take a look at the many photos and reactions of the public to this exhibit – and read all about the launch of the campaign on the London

Photos from the Manchester Installation

We thank Janssen UK for sponsoring this work and making this awareness campaign possible. Without their help and organization, this type of work would not have been possible.


Make Blood Cancer Visible 2018 coverage from Wales

The Make Blood Cancer Visible campaign:  was set up in Cardiff during the week of 10 – 15 Sept, in Working Street.

Take a look at the many photos and reactions of the public to this exhibit – and read all about the campaign on the London launch page

BBC Wales evening news Make Blood Cancer Visible 2018

Interview with Donna and Dr Ceri Bygrave, including footage of the installation and the campaign film

Interview with Donna talking about her daughter Emily, the Make Blood Cancer Visible campaign and the installation

Remembering Emily: Recapturing the joy a teenager brought into the world before she died

Emily Clark was determined to help other cancer patients before her death. Read the full article on Wales Online.

Western Mail: "We had no idea of the impact Emily had on other people"

The legacy of cancer blogger Emily Clark continues to inspire others more than two and a half years after her death. Mark Smith caught up with her mother and sister.

Wales Installation Photos

We thank Janssen UK for sponsoring this work and making this awareness campaign possible. Without their help and organization, this type of work would not have been possible.


Take Part in Make Blood Cancer Visible 2018 this September

For a better understanding and perception of blood cancer

Throughout September #BloodCancerAwarenessMonth, we will tweeting bite-size MDS Facts and results from our MDS UK survey, which assessed the status and needs of 171 MDS patients in the UK.

The month-long campaign is called Make Blood Cancer Visible. We are working with colleagues of all Blood Cancer Charities: Anthony Nolan, Bloodwise, CLL Support Association, CML Support, Leukaemia Care, Lymphoma Action, Myeloma UK, and Waldenstrom's Macroglobulinemia (WMUK), with the support of Janssen UK.

Blood cancer is the third biggest cancer killer in the UK, claiming the lives of more than 15,000 people each year – more than breast cancer or prostate cancer. We believe that making blood cancer more visible will help people identify symptoms earlier, strengthen the community of people affected by blood cancer and help us to fund lifesaving research.

Help us raise awareness with the general public this September by sharing MDS Facts and MDS Patient Stories.

Make Blood Cancer Visible 2018 Installation

The pharmaceutical company, Janssen, has put together an amazing installation of transparent, motion-activated human figures which creatively represent the ‘unseen’ or invisible nature of blood cancer. The figures share real-life stories from people with blood cancer, in their own voices, encouraging passers-by to listen to their experiences and to show their support for the campaign.

Over the course of September, the installation will travel to four locations, starting in London on 4 September. It will then move onto Cardiff, Manchester and Edinburgh. The dates and locations are as follows:

Westfield Stratford, London 4 – 8 Sept
Working Street, Cardiff 10 – 15 Sept
Piccadilly Gardens, Manchester 17 – 22 Sept
Waverley Mall, Edinburgh 24 – 29 Sept

Make Blood Cancer Visible 2018 Installation

MDS UK team was present on the day representing all MDS UK patients

Our Oxford Group coordinator, Claudia Richards, was chosen to feature in the exhibit and share her experience of living with MDS. Last year she also took part in the installation and presented a section on the 2017 Make Blood Cancer Visible event. Here is a video of Claudia telling her emotional journey after diagnosis.

Listen to Claudia explaining what was one of the first challenges she faced when she was diagnosed with MDS:

At the installation we met Ally Boyle MBE, who campaigns with us, and we are immensely grateful for the work he is doing. Also present were our dear staff members Raqeebah and Mike, and our CEO, Sophie.

MDS Team at Make Blood Visible 2018 Installation

MDS patients and carers talk about their MDS experience and the Make Blood Cancer Visible campaign

We spoke to some of our brilliant MDS patients and carers and here is what they said about their MDS experience and the Make Blood Cancer Visible campaign.

"Increased awareness and education is vital as the more people who know the signs, the more people will be able to recognise something is wrong" - Ally Boyle MBE

"Being involved with the support group gave me another identity other than being a MDS patient and stopped me from worrying about my disease as I was contributing to something important" - Claudia Richards

"Most of the time I look perfectly normal and it is a hidden problem. You have to manage your life to stay well" - Ian

"The installation will hopefully raise awareness of MDS.״ Talking about your diagnosis with other patients and being in contact with the support group is quite good as I get to learn from other people's experiences and also about the disease" - Prue

"It is a comfort to meet other patients and to see how they are living a normal life and being positive for the future" - Paul

"I look completely healthy and normal however my blood counts don't reflect this. MDS is a silent and hidden disease" - Dennis

"It is helpful to come here to talk to other MDS patients and carers" - Maureen

"Don't panic when you get the diagnosis, just keep going and be positive" - David

"My husband David has MDS and I give him his weekly injections. He seems perfectly fine just a bit tired although it is hard to keep him down" - Patricia

"Get on with your life and live it to the full" - John

MDS Symptoms Before Diagnosis

More images of the fantastic MDS Representation on the day

DAME KELLY HOLMES GIVES HER SUPPORT TO #MakeBloodCancerVisible

Dame Kelly Holmes is the official ambassador for Make Blood Cancer Visible 2018.

We thank Janssen UK for sponsoring this work and making this awareness campaign possible. Without their help and organization, this type of work would not have been possible.


September Blood Cancer Awareness Month

Make Blood Cancer Visible

September is Blood Cancer Awareness Month.

Last year, in 2017, the event was marked with many other blood cancer charities, with an extraordinary art installation in London, named “Make Blood Cancer Visible” – which featured the names of 104 blood cancer patients in red letter statues – and exhibited in central London. 104 statues – to remind people that 104 people are diagnosed with a form of blood cancer every day.

On that occasion our own Trustee and Oxford Group Coordinator Claudia Richards was chosen to present a section on the day. She said then:

I have clear memories from my adolescent years of adults around me talking about cancer in hushed tones, with the term itself not even being voiced. We have thankfully moved on from that in the last 50 years! During that time, awareness raising campaigns have allowed us to inform ourselves about the visible signs and symptoms of, for instance, meningitis, stroke or heart attack. We are also gradually breaking down barriers to talking about mental health issues. So maybe it’s high time we did the same for invisible diseases, and particularly blood cancers which account for one-third of all cancer deaths.

In the minds of the general public at least, the term “cancer” is predominantly associated with solid tumours, and specifically the four most common forms. As far as blood cancer goes, while most people may have heard of leukaemia, for instance, they are unlikely to be aware of the symptoms, let alone be familiar with terminology such as “chronic”, “acute”, “myeloid” or “lymphatic”. That is, until they – or someone dear to them – receives that diagnosis. And as clinicians are clear about the fact that early diagnosis is key to a positive outcome, raising the profile of blood cancer and its symptoms is key to ensuring that more people seek medical advice at an early stage.

Blood cancer, rare or otherwise, needs to be made visible, and we can all help to make it so. We may not all have the artistic vision of a light installation in Paternoster Square, but we can wear a lapel badge, share information on social media, raise funds for a patient support group or blood cancer charity, talk to our MP about the importance of the APPG on Blood Cancer and ensure our GP receives information material on blood cancer symptoms and diagnosis.

Make Blood Cancer Visible Installation in Central London

Make Blood Cancer Visible Installation in Central London

MDS UK members were also there raising awareness

Several MDS UK members were covered in the event – and had their statues displayed. Some even chose to keep their statues!

Tina at Make Blood Cancer Visible

Tina at Make Blood Cancer Visible

Blossom & her story at the Installation

Blossom & her story at the Installation

Claudia's display at Make Blood Cancer Visible

Claudia's display at Make Blood Cancer Visible

The 2017 Campaign

The 2017 Campaign was covered in the media – and many MDS patients attended the launch, and the subsequent exhibition, which lasted a month.

This event was sponsored by the pharmaceutical company Janssen, to raise the need for more awareness of blood cancers – and was covered widely in the press.


Dr Martin Wermke explains how iron overload can affect the outcome of stem cell transplant


MDS UK Patient Support Group Newsletter – May 2018

Our 8th edition of the MDS UK Newsletter is now out!

Read all about:
Patient's Stories: Reginald Hall, Reverend Kes Grant and Bergit Kuhle.
MDS Research: Azacitidine Latest News, Personalised Medicine and EPO Treatments.
Advocacy, Fundraising, Local News and much more.

Read More


We’ve got seven amazing people riding the Prudential Ride London for MDS UK

Great News: MDS UK is taking part in this year’s Prudential Ride London

MDS UK is delighted to announce that we've got seven amazing fundraisers taking part in this year’s Prudential Ride London, on Sunday 29th July 2018. This is one of the legacies of the 2012 London Olympic Games and will give us an opportunity to both raise awareness of MDS as well as a fantastic opportunity to raise money.

Prudential Ride London provides a fantastic platform to help fulfil The Mayor of London and Transport for London’s goal of encouraging more people to cycle more safely, more often. TfL anticipates tens of thousands of spectators and participants every year will take up regular cycling after each event. There is no other closed-road event like it that combines the fun and accessible element of a free family ride in central London with the excitement of watching the world’s best professional cyclists race.

Here is our team of SUPER RIDERS!!!

Clare Fraser
I am an indoor cycling instructor and I have my own studio in Weybridge. I am also planning on doing an 8 hour spin-a -thon where people can come and join in on the hour for 1 hour at a time and donate money for my fund raising in payment for the class.

Peter Southey
I was told I needed to get fit and this seemed a good idea, well it did at the time, as I was helping a good cause as well as me. Cycling experience almost none.

Team Cashew and Ginger: Caitlin Limmer and Moni Lau
Caitlin: I have no riding experience, am doing it purely to raise money and awareness of MDS and make a big noise with my great, great friend Moni on the back. Clare Fraser is also a great mate of ours and she is a very good cyclist. All 3 of us have been in sport for years, but Moni and I are defo a liability on the bike - however we are going to try very hard!

Please Donate on Team Cashew and Ginger Virgin Money Giving Page!

Steve Richardson
My experience is that have been riding since my teens and now I am 67. I completed Ride London 2015 and 2016. I have been an MDS patient since 2011 but have been lucky to maintain my levels on EPO

Darren Laverty
I work with Russell and have known him for too long!! Around 30 years now. I have just started cycling but I always like to have a challenge to focus on and keep my fitness levels up and keep me out of the pub. I have seen Russell’s journey with MDS and cannot think of a better cause to raise a few pounds for.

Alex Myers
I'm a fairly regular cyclist, though have never done Ride London. I'm now mostly into triathlons, but last year did the Granfondo Stelvio in Italy which is a similar bike ride to this in distance. My father in law Don Barrett, who is Treasurer of MDS Patient Support, is very passionate about the work the charity is doing so I wanted to try and support with fundraising along with giving Ride London a go.

We would love more supporters to come on the day to be on the course and look out for our #TeamMDS. For details on the day, please email us to fundraising@mdspatientsupport.

MDS, Myelodysplastic Syndromes, are complex blood cancers. The impact of MDS on an individual’s quality of life can be dramatic and devastating. At the current time there is no cure for MDS other than a bone marrow transplant and even then as few as one in 10 patients will be fit enough to survive the rigours of treatment.

Prudential Ride London: Team Cashew and Ginger

Team Cashew and Ginger

Prudential Ride London: Alex Myers

Alex Myers

Email Us fundraising@mdspatientsupport

If you wish to read more about why we need funds – please consult our Support Us pages


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

Sophie Wintrich, Chief Executive of the MDS UK Patient Support Group, interviewed Prof. David Bowen – Consultant Haematologist at St James University Hospital, Leeds. Watch the video and read the excerpts below.

"We've always practiced personalised medicine"

"Personalised medicine means that you sit with an individual in front of you and you consider them as an individual, and you talk about their disease, their type of MDS in the context of their problems, their symptoms, so it's always been personalised. It's always been personalised in that you use your intuition, your experience and your judgement in the management of that patient."

"To practice good, proper precision medicine, you need the biological data, you need an idea of their quality of life, you need an idea of the diseases affecting that patient and you need an idea of that person's preferences. There are many factors now playing into the concept of personalised or precision medicine. The general view is that precision medicine is all about genomics, but it isn't..."

Should we start to insist that all MDS patients must have a genetic mutation test to establish what treatments may work out best for them?

"Genomic medicine is very much the happening field of cancer biology at the moment, and MDS is no exception. In fact MDS has been leading the way"..."We can tell from a set of mutations that we analyse which MDS patient has which mutations; but there are many technical reasons why one mutation may be relevant, and the same gene mutated in another patient might not be causing the disease or might not be present in a high enough quantity to be sure that it's actually relevant."

"The more we know about this field, the more complex the analysis of the data becomes." "Whether every patient needs a genetic test for routine management is debatable, because there are relatively few drugs that we use that are actually able to target the mutations that we know are there. If we see mutation X, we use drug Y - we are not quite there yet."

What would be the research benefit of collecting tissue samples from all MDS patients? How can patients ensure this happens?

"Research is always important. Without research we don't make progress. There is more of an acceptance today that large data sets from routinely treated patients are just as valuable as clinical trials that we do in parallel."

"We have a big registry programme here in Yorkshire and Humber where we are doing mutation analysis on all MDS patients, following over time, from a population of about 3,000,000 people... In the European Registry we are doing something similar. It is great if a patient can participate in this. All these initiatives are going to inform the way we treat patients in the future."

Learn more about the Registry Trial

Check other current clinical trials


Free donations by shopping