Fiona Cherry MDS story: My journey to a diagnosis

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.

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Rebecca’s Story: Three Years after her Bone Marrow Transplant

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 had answers.

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Suzie, diagnosed with MDS when she was 6 years old

Suzie when she was diagnosed

Suzie when she was diagnosed

We thought it was just a normal childhood virus

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.

However, she had a nose bleed before we saw the GP which she had never had before so I decided that she should have the blood test that afternoon. Within 30 minutes of being home after the blood test we were called back urgently and told to pack an overnight bag for her because her haemoglobin was dangerously low (3.2). Suzie had an emergency blood transfusion.

It was upsetting seeing our child so ill and having no answers...

Initially it was thought that she had Transient Erthroblastopenia which is a slow developing anaemia in childhood. We were referred to a haematologist at Birmingham Children’s Hospital, we saw a consultant who suggested that a bone marrow biopsy was carried out to rule out leukaemia. The test came back which confirmed there were no leukaemia cells, at this point Suzie was feeling a little better but still not well enough to go back to school.

Over the next 9 months Suzie had monthly blood transfusions because although she was making new blood cells in her bone marrow they were not maturing. Once her haemoglobin dropped below 10 she would spike temperatures as high as 104 and this would happen on a 4 day cycle. She would start sneezing, have a high temperature and be completely exhausted. The following day she would be jaundice and sometime vomit and cry in pain.

This period was so exhausting and difficult, to see your child be so ill and having no answers or ways forward was both frustrating and upsetting.

After a year of tests they concluded that Suzie had RAEB 1 (Refractory Anaemia with Excess Blasts), a form of MDS.

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 receiving her transplant

Suzie receiving her transplant

Suzie during treatment

First shopping trip after treatment

First shopping trip after treatment

Suzie on her way to recovery

Suzie on her way to recovery

At her gymnastics competition

At her gymnastics competition

It would have made life a little easier if we could have spoken to a family who had been through a similar journey

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.

Enjoying life

Enjoying life

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.


Adrian, husband of Emma, who was diagnosed with MDS in August 2018

Emma's diagnosis came as a shock

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 it was not to be, the Dr informed us that Emma had MDS, but couldn’t give a fuller explanation due to some further tests waiting to be carried out. She told us that MDS was a journey, and that it would ultimately lead to AML, and then death if she didn’t have a Stem Cell transplant. We left the hospital in a daze and Emma broke down.

Whilst we were outside she said the most British thing I have ever heard: she said that what she needed was a cup of tea.

A Bone Marrow Transplant is the only cure for MDS

If you’re in good health, sign up to be in the register and you could be a lifesaving match for someone with blood cancer. All it takes is a bit of spit or a swab!

A holiday overshadowed by the diagnosis and how we found out about MDS UK Patient Support Group

I was due to fly back to Cyprus where I was working the next morning. I worked at the Royal Air Force. They were understanding and let me have some time off.

The family had planned a holiday to Cyprus, which we duly went on, but it was overshadowed by the diagnosis, and we couldn’t tell the children as we were only half aware of what was happening. Whilst being away, we googled the condition a lot and the information we found was complex and scary.

My Brother in Law, Keith got into researching and found MDS UK, and he made contact with Sophie. She explained to him what it was and Keith then relayed to us. It was a worrying time.

Thanks to MDS UK we had Emma's condition explained by a specialist

On coming back to the UK, we were able to get an appointment through MDS UK and York Hospital to see a specialist in Leeds, Prof Bowen, who was able to give us the results of the cytogenetic tests.

Having Emma’s condition explained by a specialist helped a lot. He gave us the correct information, although not great, it still helped. Emma is on a watch and wait, where she will have her bloods taken every 4 weeks. This is always going to be a worry, but I’m glad that we are now under the care of the specialist team.

MDS UK Patient Support Group

If you or someone you know is affected by MDS, give us a call. We can do a lot to support, from putting you in touch with fellow patients to providing you access to MDS Specialists


Russell Cook: “The diagnosis has given me an enormous focus, it’s made my family much closer”

In 2010 I had the last of three bone marrow transplants to treat my MDS. Quite a few things have happened since then!

Russell Cooks tells about his diagnosis and what happened next

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 without a feeling of overwhelming fatigue. So you can imagine my surprise when, a mere six months after my last transplant, I was able to go back to work - albeit only for a day a week initially. I was also able to take part in a charity walk, itself a milestone since I’d only previously managed to make it to the end of my road!

I had the most amazing support and help from my work colleagues and when I came back they were very keen to make sure that I didn’t overdo it. Imagine my wife’s surprise when, during the first six months back at work, I found myself, presenting to groups of up to 80 people in towns in all corners of the UK - from London, Manchester, Birmingham, Cambridge, Bristol, Edinburgh, Belfast. So, not exactly the idea I had to come back to work gradually….

Russell Cook Running The Cabbage Patch
Russell Cook Running

My stubborn approach to endurance events and how I joined MDS UK Patient Support group

In 2012 I decided that I needed to try and get back to some sort of fitness so I took up jogging and in 2013 managed to run my first marathon - the London Marathon. My wife will always tell you that there was never any doubt in her mind that I would finish it although there were quite a few people at the start of the race, when I was telling my story, who were quite frankly amazed I was there at all! Especially as I’d just been getting over bronchitis and the furthest I’d run in my life was only 7 ½ miles!

This only spurred me on to do more. So in 2014 I ran three marathons, two half marathons, and a 14 mile assault course to raise money for a number of charities of which MDS UK was a major beneficiary. I’ve also run comedy nights and ‘beer and curry’ nights to help raise funds and if anyone wants any help on either of those you can count me in straightaway!

Clearly this brought me to the attention of Sophie Wintrich, the CEO of MDS UK, who felt that my somewhat stubborn approach to endurance events might rub off on the charity! It was a huge honour to be asked to join the charity as a Trustee and I’m as determined as ever that people throughout the UK should have access to the best information, the best support, and for a team of people dedicated to their specific illness. More recently I’ve taken over the role as head of fundraising in between trying to fit this into a successful business and we’ve recently managed to secure places in nationally recognised sporting events.

I have represented MDS UK at the All Party Parliamentary Group on Cancer at the Houses of Parliament and have been involved in a number of campaigns through my efforts on social media where I seem to have developed a note of notoriety!

Russell Cook Running The Cabbage Patch

Russell Cook Running The Cabbage Patch

The diagnosis of cancer with the benefit of hindsight...

In my work life things have most certainly changed for the better. With the benefit of hindsight it’s obvious to me now that for the 10 or 15 years prior to my diagnosis with MDS that my health was suffering and consequently my ability to work. Work was a chore, I was constantly tired, and because of that I found working life to be unsatisfactory and I simply really wanted a way out.

The diagnosis of cancer, as it’s turned out, has actually turned out to be the best thing that happened to me. It’s given me an enormous focus, it’s made my family much closer, it’s given my kids the confidence to go out and do things firmly in the knowledge that they can do absolutely anything. And in my work life it’s transformed everything. So much so, that in 2017 I managed to receive the accolade of top associate partner with my firm of national financial advisers - Foster Denovo.

Nearly 8 years post transplant I find myself more enthused, more energetic, more focused than I’ve been at any point in the previous 30 odd years. More importantly, I am cured of MDS.

My vision for MDS UK Patient Support Group

Going forward, I’d like to see the charity expand its sphere of influence, become a major director of research into MDS but only would also like to see more people involved in the running of the charity. It’s an incredibly small team of people who frankly do the jobs of dozens of people and I would like to be a catalyst to encouraging people to join us.

Please do send us your story – whether you are a patient, family member or friend:
Email it to mds-uk@mds-foundation.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.


Ally Boyle: a retired fire officer tells us his experience with MDS

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.

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Ghani needed Azacitidine, but in Kosovo there was no easy way to get it

What national and international patient advocacy can achieve when working in cooperation

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.

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Bergit Kulhe, MDS patient and advocate, tells us about her experience with iron chelation

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.

No chance to lay down my burden of iron overload somewhere

Our organism does not have any biochemical or physiological pathway to remove excess iron. Instead the excess iron accumulates mainly in the liver, joints, pancreas, bone marrow and at the worst in the heart, causing organ and tissue damage in the long run. We’re talking about transfusion-related iron overload.

I have been a Myelodysplastic Syndrome (MDS) patient for more than 12 years and I regularly need blood.

The main cause of iron overload is transfusion therapy. Each unit of blood transfused delivers 200–250mg of iron. After only 20 units of transfused blood, 4,000–5,000 mg of iron will have been delivered to the body. At this ironloading, the serum ferritin level rises to about 1,000μg/l. When this level is about to be reached, the doctor suggests iron chelation for transfusion-dependent patients like me.

Bergit Kuhle: MDS Patient on Iron Chelation Therapy

I have been a Myelodysplastic Syndrome (MDS) patient for more than 12 years and I regularly need blood.

Each unit of blood transfused delivers 200–250mg of iron. After only 20 units of transfused blood, 4,000–5,000 mg of iron will have been delivered to the body.

But our organism cannot remove the excess of iron so it accumulates mainly in the liver, joints, pancreas, bone marrow and at the worst in the heart, causing organ and tissue damage in the long run.

My experience with the iron chelator Deferasirox

I have never had a wealth of medical expertise on iron overload. I have accepted the most important fact: excess iron does harm to my vital organs, so chelation is necessary.

Everything went according to plan. I trusted the medication, not giving too much thought to the issue. I have been tolerating the iron chelator, Deferasirox, without significant side effects for 10 years now. I only had an uncomfortable rash in the beginning, which disappeared after two weeks and never ever came back. The ferritin level reliably has descended and always has
stayed below 1,000μg/l.

So, I felt safe from life-threatening organ iron deposition. I was as compliant as can be and always, always took my pills or my suspension even when travelling. I even prepared and swallowed the suspension in an airport’s ladies room. Finally, I have built confidence in my ferritin level, which was fluctuating a little from time to time. But ‘what the heck’, my haematologists have
been content with 400-700 μg/l and I have never been experiencing any discomfort.

I have been lucky with my iron-chelator Deferasirox, being free from side-effects. Whereas in MDS web forums and in my work with patients, I met with various people suffering from all kinds of bearable or unbearable side-effects, mainly such as all stages of gastrointestinal disorders.

A chemical compound binds with the excess of iron in the body to safely pass through the body

Whether you are offered iron chelation treatment or not will depend on the likely benefits versus the likely disadvantages in your
individual case. This will be discussed with you before you make a decision to start iron chelation.

Desferal is a drug to treat the build up of excess iron and is given as a continuous subcutaneous injection under your skin by a pump. There are special teams that can teach you how to administer the drug at home. Exjade is another iron chelator and comes in tablet form, making it easier for patients with poor sight, problems of finger dexterity or a fear of needles. However, in most cases this is only available for patients who cannot manage subcutaneous Desferal or who have serious side effects on Desferal.

Both treatments have certain side effects and often need to be continued for a long period of time to be effective. Your doctor can advise you which drug will be best in your situation.

From our booklet Understanding MDS: Patient Handbook. Click here to download

Devastating news

For me years of chronic transfusion dependence went by and I counted my blessings: more than 530 units of blood in total since 2008, with a stable transfusion interval of 10-18 days since 2010.

My treating professor initiated an invitation for me to a special clinic, where I underwent an MRI in autumn 2017. They scanned my heart, liver, pancreas and my bone marrow. The results were devastating. My view on iron overload broke with the medical report. I still have not fully recovered from what I was told. I would be very lucky, the radiologist said, if my heart was still free of iron. But my liver and my pancreas show a five-fold iron overload, also my bone marrow is full of iron. Another obstacle for
haematopoiesis in addition to my blood disorder.

Where do we go from here? Heading towards diabetes, liver cirrhosis or even hepatic cancer? My heart is iron-free, yes, but the pancreas is strongly loaded. No reason for long-lasting joy as the pancreas takes up similar iron species as the heart, only earlier. Iron overload of the pancreas serves as an early and robust marker of prospective cardiac risk.

It is neither an option for me to increase the dosage of the iron chelator – this could be toxic for my kidneys for instance - nor to reduce the number of transfusions – this would destroy my quality of life and would send me into severe anaemia. I’m stuck.

As so often in the course of my disease there is a diagnosis without any therapeutic consequences. That’s frustrating.

On the medical report I more recently read ‘severe hemosiderosis of the pancreas and the liver’ amongst my other serious health problems. However, my liver values (GPT, GOT) are not yet elevated. Not yet? I am anxious and confused: that’s the patient’s perspective.

Only now I am finding out that for any one patient, the predictive value of ferritin is quite poor. Two patients with identical total body iron burdens can have vastly different serum ferritin levels. Many factors affect the relationship between iron overload and serum ferritin levels. But still the ferritin level generally correlates with both, total body iron stores and clinical outcomes.

Serum ferritin therefore remains the most commonly used metric to monitor iron chelation therapy. Mainly because its measurements are inexpensive in comparison to MRI. However, the biology of circulating ferritin is poorly characterised and hardly comprehensible for non-physicians and non-scientists.

The way iron is regulated by the body relies on a regulated network of systemic and cellular mechanisms for the acquisition, transportation and cellular utilisation of the metal. I very well understand that these metabolisms are completely disturbed in case of strong iron overload.

Chelation Therapy: Good or Bad?

At the end of this article I want to make clear one thing: the outcomes of chelation therapy in Myelodysplastic Syndromes are not bad. There is a positive impact on survival, without doubt. I probably would not be alive any more without Deferasirox.

There are retrospective studies clearly indicating a significant improved survival in patients who received regular iron chelation. Transplant outcomes are also far better after iron chelation therapy. And in case there is a cure, high iron stores can be drained or at least reduced by a most effective phlebotomy therapy.

So yes, there are definitely some solutions for iron overload, if you are in the right cohort. But we urgently need more innovative iron chelation therapies.

Bergit writes a regular column in ‘MDS Europe’, the online home of the MDS-RIGHT project and the future hub for all European MDS information and guidance.

This article appeared first in MDS Patient Support Group Newsletter May 2018

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Joseph Vella: His experience with azacitidine and stem cell transplant at the age of 63

“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 as the full regime I believe.”

I would like to introduce myself. My name is Joseph Vella. I am a medical practitioner by profession and now I am 66 years old. I am of Mediterranean ethnicity — I come from Malta. However, nowadays I spend long periods in Britain, at my home in Bury St Edmunds.

I started feeling very tired and I could not enjoy wine. It had a particular, nasty taste

At 62, four years ago, in March 2010, my wife and I went to Mexico for a few days. We returned to Southampton on a transatlantic cruise from Miami.

I started feeling very tired during the cruise. I could not keep awake during the daily after-dinner show. Also, during dinner, I could not enjoy wine. It had a particular, nasty taste. I kept ordering finer wines but to no avail. On one occasion I tried swimming in the pool but I almost drowned. Usually I am a strong swimmer but I almost did not manage to get from one end of the pool to the other (only about 10M).
Something was definitely very wrong with me.

I knew that I had been bitten by some insect while I was in Mexico, and that I ran a mild temperature for a couple of days.  However I was well again when we boarded ship.
Eventually we landed at Southampton and my wife and I went to stay for a few days at my daughter’s house in Waltham Abbey. I was still feeling very tired and found that I could only negotiate two storeys of steps with difficulty. I kept on believing that it was some tropical disease I contracted in Mexico.
My wife and I went to Malta, and I had some blood tests done. To my surprise, my Haemoglobin level was down to 10.1 g/dl.  Platelet count and White Blood Cells count were both down. A blood smear showed blast cells. A bone marrow biopsy confirmed MDS with 10% leukaemia cells.

Joseph Vella: MDS Patient on Azacitidine and Bone Marrow Transplant

My daughter is a doctor and was being trained in a subspecialty at King’s. Seeing that the world expert on MDS was Prof. G.J.Mufti, based at Kings I asked my daughter to make an appointment  with him. In fact I was seen by Prof. just three days after the diagnosis was established.
Apparently, the protocol at the time was that people over 60 years of age should only be given palliative treatment. However Prof. agreed that I should undergo several tests to establish whether I was fit enough to be given the full treatment with a view to Bone Marrow Transplant in the future.

MDS Centres of Excellence in the UK

I started on Azacitidine daily for one week and ten days after fever came with a vengeance

I proved to be healthy enough, and was started on 5-Azacitidine inj. daily for one week. Ten days after I finished my first course, fever came back with a vengeance. The insect bite disease came to the fore. My body temperature was oscillating between 102 and 104 degrees F. This was accompanied by a very severe cough, a generalised body rash and grossly swollen legs  which were excruciatingly painful when I tried to walk.  I was admitted  for treatment but no antibiotics seemed to help. After about three weeks on Davidson Ward with no improvement in sight, I despaired of living and asked for the treatment to be stopped so the disease could take its natural course. I was talked out of this attitude by Prof. himself (and thank God I obeyed). All blood cultures proved negative, even when taken during the rigors.  So an intracellular bug was postulated. In fact I was started on Doxicycline and within five days I was fine and discharged home.

Treatment with 5-Azacitidine was, eventually, resumed and by September 2010 my MDS was in full remission and I was deemed ready for a Bone Marrow Transplant.

My experience with Bone Marrow Transplant

Unfortunately no match was found for me in the International Bone Marrow Donor database.  I only had one sibling, a younger sister, who a few years previously had suffered an intracranial haemorrhage from a Berry Aneurysm.  I could not upset her  with a request to be tested for a possible match.  All my family was tested and, fortunately, both my daughters proved to be mine!  Prof. suggested that bone marrow from one of them be transplanted, a technique that was being perfected. In view of the length of time I was expected to be under treatment and eventual observation I bought a house in England.
A haploid (half match) transplant was scheduled for 19th January 2011, following a reduced regime of induction, a Mini Transplant because of my age.  A couple of days after the transplant I developed explosive diarrhoea, which took a long time to be brought under control. I experienced several early complications like Graft Versus Host Disease of the skin, including my scalp and face, and neuritis of the soles of my feet. Other later complications were a lung infection with PCP, and Herpes Zoster of my left eye. These were all controlled by the team of doctors at Kings.
The only problem at the time (and to date) seemed to be that, though my white cell counts and platelets were at an acceptable level, my Haemoglobin level kept going down, necessitating repeated transfusion. I was started on Darbopoietin Injections with very good effect. The Hb. level is kept swinging between 110.g/dl and 13.5g/dl in between injections, a level I have to keep as otherwise I get chest pain on exertion if it goes down below 11g/dl ( I had a quadruple coronary bypass in year 2000).

In the meantime I was allowed to go on holiday to Malta on several occasions. Three years after the transplant I started to holiday for longer periods and, now, I no longer have to go for follow-up every 15 days. Follow up is every three months.

Been through hell and back but it was worth it

Looking back I know that I have been through hell and back but it was worth it. I am now healthy and look forward to the rest of my life with optimism. I have been supported by my wife through it all, and I know that she has passed through her own private hell. She was a brilliant support for my morale, though, in truth, she does tend to nag a bit too much! I know I would never have made it without her support.

I thank all the Staff at Haematology at Kings for their support and understanding. I know, through my own experience, that they can be trusted fully to go beyond the proverbial mile to get the desired results.

I hope and trust that my little story could 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 stem cell transplant. The reduced regime used to treat me has been quite successful. It is not as stressful as the full regime I believe.

MDS Centres of Excellence in the UK

Share your experience and questions!


Reginald Hall Patient Story: at 95 and happily married

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.

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