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 […]

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 ulcers, really big ones. This led my GP to run some blood tests which showed that my platelets and neutrophils were low. I was referred […]

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 and treat. It took us weeks to get our heads around it (never mind learn how to pronounce its full moniker, Myelodysplastic Syndrome, correctly — […]

“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 […]

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 couple of times a week. I just happened to have a random blood test which showed that I had a low white blood cell count. […]

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 […]

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 […]

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 […]

“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 experience of living with the disease, her coping strategies as well as her work as a patient advocate. It is also an invaluable source of […]

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 […]

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 married for 51 years. We have a 38 year old daughter, Rebecca, who has suffered from ME/CFS since she was 16 years old. With great […]

My name is Michael Bower, I am a 63 yr old male. I was diagnosed with MDS in September 2016. Having had trouble with my blood count after an operation (a total knee replacement) I was sent to see a haematologist who sent me for a bone marrow biopsy. This showed that I had myelodysplastic […]

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. […]

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 routine blood tests which had revealed abnormalities in two of the readings. After another blood sample was taken prior to my consultation with my consultant […]

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 […]

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 […]

“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 / […]

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 […]

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 haematology department annually for 4 years. We went to the results appointment expecting to be sent home with a flea in our ears again. But […]

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 overwhelming fatigue to going back to work For me, a major milestone after my diagnosis was simply being able to climb stairs and dress myself […]

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 were in the midst of moving house and my wife was in the late stages of pregnancy, so I thought it was just stress. Shortly […]

By Blerina Ahmetaj-Shala. Imagine hearing the news – you father in law, a young, fit and seemingly healthy person has MDS. What was MDS though? I had never heard of it despite working in science myself, and living in the UK. All diseases or illnesses are ‘inconvenient’ but this discovery really did come at a […]

“I hope and trust that my little story would encourage other MDS sufferers to decide to go through with the treatment. It was proved that even patients who are more than 60 yrs. old can benefit from Bone Marrow Transplant. The reduced regime used to treat me has been quite successful. It is not as stressful […]

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 […]

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 […]

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 […]

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.

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 […]

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. […]

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 […]