MDS Patient Stories

Patient and relatives/carers experiences

We feature here the experiences of real MDS patients and their families. They have been willing to share with us their stories and photos, in the hope that fellow patients will find it helpful to read how they have learned to live with the disease.

Although each person with MDS will cope in their own unique way, stories offer a bridge between the technical, rational world of scientific practice and the life of patients. All medical details shared in these stories have been vetted for clinical accuracy.

Please do send us your contribution – whether you are a patient, family member or friend by email info@mdspatientsupport.org.uk or call to our main office Tel: 020 7733 7558.

Simon Wilkes: “Hopefully so many lives will be saved!”

Simon Wilkes: “Hopefully so many lives will be saved!”

I was diagnosed with Myelodysplastic Syndrome back in September 2013 after suffering with fatigue and tiredness. At that time I was a football coach at a local Youth football club ,Withymoor Colts, which had 34 children’s football teams. I was also youth team coach at my home town club Stourbridge F.C., as well as being […]

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Frank Jones’s story: an optimist by nature

Frank Jones’s story: an optimist by nature

I suppose my story started 3 or 4 years ago when my wife Alison and I were living on our narrow boat and cruising around the country’s canals. I had a blood test for something – no idea for what now – but it threw up that I was a bit anaemic. Because I wasn’t […]

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Kate, with MDS RA-RS, determined to keep fit and healthy!

Kate, with MDS RA-RS, determined to keep fit and healthy!

I’m Kate, 48yrs from Yorkshire, recently diagnosed MDS RA-RS in July 2020 – found out by complete accident as I had no symptoms. January 2020 – went to the Dr as my chiropractor asked me to get a blood test to check for inflammatory markers – I had an ongoing severe muscle spasm in my […]

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Anna Sherratt

Anna Sherratt

Update January 2021 Very sadly, we heard that Anna passed away. We are unsure of exact details at the time of writing, but will be updating the information if we receive further information. Ever since her early contact with us in 2016, Anna had been a fabulously active and supportive member of the Oxford MDS […]

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Will McGookin: MDS diagnosis and his interview with Sky News

Will McGookin: MDS diagnosis and his interview with Sky News

MDS patient Will McGookin was delighted when a twitter post about the postponement for his chemotherapy due to Covid19 led to an exclusive interview with Sky News. The piece considers how the treatments and lives of cancer sufferers have been put on hold due to the pandemic, the while raising much needed awareness of MDS. […]

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

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 years. But this appointment was different. That day I would finally get a diagnosis and even though it was shocking and terrifying a sense of relief was there as finally I […]

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

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 at the diagnosis, finally having a name for my condition put an end to the uncertainties and frustrations that my symptoms had evoked. In the years leading up to 2012 I’d […]

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Kes Grant tells us how it feels to live with MDS

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 of years before that. This was highly unusual at the time because people that was diagnosed with my type of cancer (MDS) were actually older than me, in their 60s / […]

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Fiona Cherry MDS story: My journey to a diagnosis

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 while to get my head around it, but my journey to this diagnosis started many years prior to this. My mum died when I was 5 years of age of Tuberculosis […]

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Reginald Hall Patient Story: at 95 and happily married

Reginald Hall Patient Story: at 95 and happily married

Reginald Hall’s story is an uplifting one. Reginald is an MDS patient who has been a member of MDS UK Patient Support group for quite some time. Lately we received a couple of letters from him and he allowed us to share them with our members on the website. We received Reginald’s first letter on […]

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Suzie, diagnosed with MDS when she was 6 years old

Suzie, diagnosed with MDS when she was 6 years old

Suzie was 5 years old when she became unwell. She developed a really high temperature and chesty cough so we thought it was just a normal childhood virus. We presented her to out local GP and he prescribed antibiotics. However, she continued to spike high temperatures so we took her back to the GP I […]

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Evie McClean

Evie McClean

Evie McClean is a young member of the MDS UK Patient Support Group. In July 2014, when she was 8 years old, Evie was diagnosed with leukemia. After 4 months of chemo she had 6 month of remission, but then she became ill again. In July 2015 she was diagnosed with MDS and bravely endured […]

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Shirley O’Brien MDS Story

Shirley O’Brien MDS Story

Five years ago, my spouse and I had settled into our dreamed-of retirement. But on Feb. 6, 2012, I was diagnosed with myelodysplastic syndrome (MDS). Because I was in my early 70s, a bone marrow transplant wasn’t my best option.

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Patient’s Story: Linda takes part in a clinical trial

Patient’s Story: Linda takes part in a clinical trial

I first visited my GP in March 2014 with the symptoms of a condition which was eventually diagnosed as Sideroblastic Anaemia. I was 59 years old, still working full time as a Chartered Accountant, and enjoying a life without any responsibility except for work and home. The Haematology Clinic at the PRU and the Supportive […]

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Sachiyo Ishii tells us about her mother’s MDS

Sachiyo Ishii tells us about her mother’s MDS

Sachyio lives in the UK. Her Mum has MDS, but lives in Japan. A few of our members have family far away, and when travel is particularly difficult or expensive it gets really hard. So this is the contribution of one daughter – helping her Mum cope with MDS and helping to raise awareness internationally. […]

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Nigel Walpole

Nigel Walpole

My MDS story unusually starts some years before diagnosis. In about 2006 or thereabouts, my sister was diagnosed with MDS. Despite the very best of care and specialist treatment at King’s in London, her condition became AML and she sadly died in 2011, aged just 57. During her illness I became all too familiar with […]

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Emma Paine

Emma Paine

I have been fighting blood cancer for 12 years, and I have been fighting it hard. I have taken every opportunity given to me to treat it and live my life to the fullest. When my MDS relapsed and showed signs of progression to AML in July 2015 I was shocked to find out that […]

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Brenda Goodland

Brenda Goodland

Brenda’s MDS was diagnosed in 2008. For six years she was in a “wait and watch” period; having regular three month blood tests and an annual bone marrow test. MDS did not stop her from living a full and busy life. In 2016 she suffered from severe pneumonia and a bone marrow test revealed that […]

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Christina Fowler

Christina Fowler

Christina was diagnosed in 2009 with MDS/RARS at her local hospital in West Sussex by Dr Narat and has been treated at Kings since 2011. Read Christina’s story and her helpful TIPS TO STAY POSITIVE WITH MDS. First I asked “Why me?” then started to make adjustments I was diagnosed in 2009 with MDS/RARS at […]

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Jayne Snell

Jayne Snell

Jayne writes about her MDS diagnosis and treatments leading up to her stem cell transplant in July 2012.This article was published in the MDS UK Newsletter 3 and 4 – in January 2013 – and Sept 2013.”I lived 42 years with my original blood and immune system; the plan is to live 42 years with […]

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