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.

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