MDS Patient Stories

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 […]

Following is an article by our friend and long-term MDS patient advocate from Germany, Bergit Kuhle. Bergit, together with Anita Waldmann, runs an MDS Patient Group in Germany, and both are founding members of the international MDS Alliance – the umbrella organisation for all national patient groups in the world. Our organism does not have […]

“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. […]

Back in August 2015 I was noticing how tired I was. I would sit down in the evening feeling totally exhausted and then castigate myself mentally that I hadn’t accomplished everything I had planned to do. Was there something wrong with me? First symptoms… Am I old and fat? I had reacted badly to a […]

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 […]

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 […]

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 […]

“I was in my early 30’s when I was diagnosed with MDS 5q- when there was very little to offer in the treatment of MDS other than supportive care, or bone marrow transplants. “ Fiona is an MDS del 5q patient, and is being treated with lenalidomide. I was in my early 30’s when I […]

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 […]

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 […]

Secondary MDS (following breast cancer) – with chromosome 11q deletion Diagnosed 2010 – age 67.  Watch and Wait/Watch and Monitor “I have never met anyone else with M.D.S. but would love to hear from anyone with similar experiences.  Unfortunately I am a techno-dinosaur, but Sophie has my address.” Watch and Wait/Watch and MonitorI was diagnosed […]

Story coming up ….

Daisy, diagnosed as a teenager, is one of the uncommonly occurring cases of MDS in young people.  Although Daisy was successfully treated with Bone Marrow Transplant few years ago, her journey with cancer hasn’t ended there. She decided to use her experience for the benefit of other young people suffering from cancer in UK and […]

Anthony, diagnosed with high-risk MDS and is currently being treated with Azacitidine. His route to diagnosis wasn’t a straightforward one and required a deal of determination and perseverance on his behalf to find the cause of the symptoms with which he was struggling for some time. Sadly, this also had an knock-on effect on his […]

Rodney was diagnosed with MDS at the age of 64. Within a couple of years, his symptom-free illness, at first, progressed to a hugely debilitating condition. Having entered a clinical trial of a promising drug treatment with azacitidine, Rodney was eventually freed from fatigue and transfusions for 4,5 long years, and decided to actively campaign […]

Andrea diagnosed with MDS RAEB-t type at the age of 29 was treated with bone marrow transplant in 1994, but relapsed a year later. With 5% chance of success, she was advised against the second transplant. Following a gruesome period of intensive chemotherapy treatment, she fought to have a last-chance treatment called donor lymphocyte infusion […]