Patient and relatives/carers experiences
To illustrate how patients and their families learn to live with MDS – we will feature here the experiences of those willing to share their stories and photos with us.
Fellow patients will hopefully find it helpful. Readers who don’t know MDS will hopefully gain a better understanding of this complex disease.
Please do send us your contribution – whether you are a patient, family member or friend:
Email it to firstname.lastname@example.org, or call to our main office Tel: 020 7733 7558.
You may talk about any aspect of the condition, or how your experience has affected or changed you. Feel free to add photos as well. Thank you in advance!
You are also invited to join our forum, a lively community of MDS patients sharing their own experiences and questions.
Some of you were featured in our newsletters – so we will add you shortly: John Watson and Kay Smith.
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. […]Read full post
October 2014, MDS picked up via a routine blood test because of acute Psoriasis and feeling generally washed-out and suffering night sweats. Nigel says: “Like many fellow patients I read about on the forum, I am now on my journey towards an SCT with 2 potential stranger donors identified. Read MoreRead full post
Evie McClean is a member of MDS UK Patients Support. 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 more bouts of […]Read full post
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 […]Read full post
MDS patient who is undergoing a stem-cell transplant procedure, after many years living with a very stable form of MDS. Has a very good – and amusing – blog, relating her experiences, thoughts and emotions. Also has excellent contributions from her sister Heather, who is Brenda’s donor for the stem-cell donation. Read MoreRead full post
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 […]Read full post
We have uploaded a new video clip of our friend and new MDS UK trustee Russell Cook. Click here to view the full article. He tells us in detail about his experience of his three stem cell transplants – two from an unrelated donor – which failed, followed by stem cells from his 15 year […]Read full post
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.” Maynel Vessey – MDS experience Secondary MDS […]Read full post
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 […]Read full post
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 […]Read full post
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 […]Read full post
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 […]Read full post
This is the contribution from a loving daughter, who looked after her Mum. This was written to help other family members or patients to prepare themselves when it is established that nothing else can be done – or if a patient has decided they do not wish to undergo any further treatment. It is written […]Read full post