Reginald Hall Patient Story: at 95 and happily married

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 told the GP that I was worried about how pale she had become over the last couple of days so he sent her for a blood test. I asked the doctor if I should take her straight way but he said she should be ok to go tomorrow.

After a year of tests the consultant spoke with a colleague who works in adult haematology and they concluded that Suzie had RAEB 1 (Refractory Anaemia with Excess Blasts) which is a form of MDS.

The only way to treat this effectively was with a bone marrow transplant. Suzie started to present with symptoms that suggested that her bone marrow was becoming unstable and she was at risk of developing leukaemia.

Suzie received transplant on 20th July 2012 from an unrelated donor from Germany. Suzie became critically ill during her transplant and spent her 7th Birthday in intensive care.

From diagnosis through to treatment there was very little information and support for us as a family, RAEB 1 is normally found in adults over 70. All the research that is online is very outdated and very little reference is made to children with MDS.

Suzie’s recovery was slow, she lost a quarter of her body weight and at one point she weighed less than three stone at he age of 7. At times we struggled to understand and get answers and although there were children receiving transplants for other conditions, there was no one with MDS.

Our lives changed almost overnight and it is hard to sometimes think back to those days because life was unbearable for us all.

However, Suzie did not cry once during her 9 week stay in hospital, she had to endure constant vomiting and stomach pain, her nasal tube would often have to be reinserted and she never once cried and just got on with it.

It would have made life a little easier if we could have spoken to a family who had been through a similar journey but for us the experience was isolating.

Suzie missed so much of her primary education and she struggled academically, she has worked so hard to catch up and is now working above expected levels for her age.

Suzie is now 13 years old and is part of a dance group, theatre group at school and enjoys being active and especially loves gymnastics. Her journey is one that I will be sharing via a book which I hope will raise some funds for the MDS foundation.

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 more bouts of chemo. In November 2015 Evie received a bone marrow transplant.

Very sadly, after being well for some months, in August this year her mother, Nicki McClean, was given the devastating news her daughter would need another transplant after she was diagnosed with leukaemia once more.

She had a second transplant on 22nd December 2017, Evie’s 12th birthday.

All it takes to join the register is a bit of spit or a swab

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 received chemo infusions for seven days every 28 days to improve my bone marrow and blood cell function. But after nearly 3 1/2 years of this, I learned the chemo was no longer working.

A subsequent bone marrow biopsy demonstrated progression of my MDS, with the identification of an IDH1 mutation.

I sought a second opinion and got a grim prognosis. The oncologist gave me only five to seven months to live. He said I needed to find a clinical trial soon.

CAR T cell therapy is currently being evaluated in the clinic at MSK for certain types of leukemia and lymphoma. In this approach, T cells are genetically engineered to recognize a protein called CD19, which is found on the surface of blood cells called B cells. In the largest study reported so far, for adult patients with B cell acute lymphoblastic leukemia — a rapidly progressing form of blood cancer — a report published by MSK researchers last year found that 88 percent of patients responded to the therapy. In late 2014, the US Food and Drug Administration granted MSK Breakthrough Therapy Designation for its CD19 CAR therapy.

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 Therapy unit became increasingly familiar to me as I went through an array of tests whilst receiving regular blood transfusions. Eventually, it was determined that I had MDS RCMD.

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. Take a look at her brilliant blog full of amazing ideas and gifts.

My MDS story unusually starts some years before diagnosis. In about 2006 or thereabouts, my sister was diagnosed with MDS.

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.

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.