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.

Athar Jamil

Athar Jamil

A journey of hope – my unfinished story! Nelson Mandela once said “The greatest glory in living lies not in never falling, but in rising every time we fall.” In truth, life is not a smooth sail; we don’t know what tomorrow brings. It is a crazy ride, where nothing is guaranteed. I had 55 […]

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Lynne Elliot

Lynne Elliot

Lynne’s story – 23 years post MDS diagnosis and her life has turned out much better than expected. In 2000 I had been breathless and tired (a problem I recall having on and off since the age 11 when I was found to be anaemic) and was referred again to haematology. (Every now and then […]

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Geraldine Hill

Geraldine Hill

Thanks to the brilliant team at Oxford’s Churchill Hospital, I celebrated the second anniversary of my stem cell transplant on 1 September 2023. I’m in remission now, but it has not been plain sailing… At the tail end of 2019, my GP ran various tests because I’d been run down for a few months and […]

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Chris Potter’s Story

Chris Potter’s Story

The summer of 2020 was a good one. It was hot, the sun was shining most days. I was on furlough, still being paid and I spent a lot of time sat in the garden, drinking cider and listening to music. Life was good. I remember questioning why retired people said they were always busy. […]

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Tony’s story

Tony’s story

Tony was first diagnosed with high risk MDS in January 2021 following blood tests he had for knee surgery that showed low counts and raised some alarms. He quickly had a bone marrow biopsy and MDS was confirmed. At our first meeting the haematology consultant at our local NHS hospital explained clearly what MDS was, […]

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Surekha Kodical

Surekha Kodical

In the winter of 2019 I had been referred to the orthopaedic surgeon for knee replacement surgery. Having seen the consultant I was put on the waiting list and to my pleasant surprise received a letter within two months giving me a date for my surgery. At my pre assessment I was told they wouldn’t […]

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Stories of diagnosis

Stories of diagnosis

Some people, when being diagnosed with MDS, are not told by their healthcare team that it is a form of cancer, nor what level of severity their MDS is. By not mentioning the term ‘cancer’ immediately at diagnosis, and not explaining low-risk vs high-risk, there is a risk that patients find out by chance, as […]

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Where angels fear to tread – by Kes Grant

Where angels fear to tread – by Kes Grant

Today is Rare Diseases Day and as my original diagnosis was a rare blood cancer, I thought it would be a good day to write a new blog. In my last update I explained that I’d been an in-patient and they were treating me for pneumonia. It seems I have a fungal lung infection that […]

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Alastair Day: with low risk MDS and running three marathons

Alastair Day: with low risk MDS and running three marathons

“My path to an MDS diagnosis is perhaps unusual. In 2016 I noticed that could not feel the top of my left foot. A visit to the GP plus a blood test resulted in an appointment at the local hospital.” After further tests, Alastair was referred to King’s College Hospital where he was diagnosed. He […]

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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 am fit and healthy! Well… so I thought! 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 – […]

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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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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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