Real Stories
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 […]
Read full postWillie 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 […]
Read full postRussell 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 […]
Read full postA 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 […]
Read full postLynne’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 […]
Read full postThanks 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 […]
Read full postThe 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 […]
Read full postTony 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 […]
Read full postIn 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 […]
Read full postSome 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 […]
Read full postToday 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 […]
Read full postIn 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 […]
Read full postToday 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 […]
Read full post“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 […]
Read full postMy 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 […]
Read full postI 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 […]
Read full postI 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 […]
Read full postI’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 […]
Read full post“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 […]
Read full postUpdate 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 […]
Read full postMy 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 […]
Read full postMDS 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 […]
Read full postOn 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 […]
Read full postIn 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. […]
Read full postI 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 […]
Read full post“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 […]
Read full postIn 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 […]
Read full postEmma 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 […]
Read full postIn 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 […]
Read full postIn 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 […]
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