Debbie Hickman : Covid-19 five years on 5 years on from the Covid 19 pandemic, we asked you to share your stories and memories of life under lockdown. Our current […]

Willie Chrystal – My journey so far. After returning to the UK from working in the Middle East for a year and a half I ended up in hospital on […]

Russell Cook  After overcoming MDS and multiple transplants, Russell now faces a new challenge. I’m sure there’s a few of you who will have a bit of an idea about […]

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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

In June 2015 I was diagnosed with MDS RCMD, it was something I had never heard of. The only symptoms I had had up to the diagnosis was bad mouth […]

Today marks 65 days since my husband Neil lost his battle with this challenging disease, a disease where every single case is different, making it very hard to fully diagnose […]

“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 […]

My MDS story began just under two years ago. I was a normally healthy 71 year-old (or so I thought): I had no symptoms and I was still jogging a […]

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 […]

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 […]

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 […]

“Out of Shape” by our friend and long-term MDS patient advocate from Germany, Bergit Kuhle, tells her story of life after an MDS diagnosis. In the book she describes her […]

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 […]

My name is Christine Cain, aged 69 years old, a retired PA in Public Health and I live with my extremely caring husband Tommy, in Suffolk and we have been […]

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 […]

On the 27th of August 2019 I attended York District Hospital, Haematology department at the Magnolia Centre for results of a Bone Marrow Sample I had provided following results from […]

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. […]

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 […]

“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 […]

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 […]

Emma was diagnosed with MDS in August this year, which came as a bit of shock. She has been unwell for a few years, and has been sent to the […]

In 2010 I had the last of three bone marrow transplants to treat my MDS. Quite a few things have happened since then! From climbing stairs without a feeling of […]

In mid 2007 I began to feel really exhausted and unwell, I had been working long hours in a stressful job as a senior officer in the fire service, we […]