What’s your MDS type? Read patients stories & watch the animations
24 Oct. 2021Learn your MDS Type!
On 25th October, MDS World Awareness Day, we shared personal stories and great animations about the different types of MDS - produced by our colleagues at the MDS Alliance - to shed light on this important topic and help educate patients, caregivers, healthcare professionals, and the general public on it.
Godfrey Bell' Story
I don’t know my sub-type... It has never been clarified for me...
It's been very difficult to find out about my status.
It would be very beneficial to be put in touch with patients with the same sub-type (once I know what mine is).
I find Zoom meetings not helpful, unless one-on-one with someone with the same condition. Email contact at first would be great.
I would also like to learn from a carer who has lost someone with my type of MDS...
There seems to be a great difficulty getting to talk to someone about the end of life prognosis, and how it happened.
Like Godfrey, a third of the patients who contact us do not know their MDS sub-type
Share these stories and animations with doctors, patients and the public!
MDS-EB: Stephen Andrews's Story
I was first diagnosed in November 2019. At the time, I was an active 71-year old and I was feeling perfectly healthy, but I happened to have a blood test and this came back with a rather low neutrophil count. I could have opted to do nothing, because I felt fine. However, my doctor son urged me to follow it up, and that was the best decision I could have made.
My advice to anyone in a similar position is to follow up on any concerns and don’t hesitate to push to ensure that you get properly tested.
I was given a bone marrow test very quickly and only a week later I was told the results. In my case, I was diagnosed with MDS-EB2 (EB referring to excess so-called blast cells), a form of MDS at the high-risk end of the MDS spectrum, not far from becoming acute myeloid leukaemia. This was confirmed by a second bone marrow test shortly after. I was very glad to have clarity about my diagnosis early. It made it much easier for us to plan how best to proceed.
I was identified as a strong candidate for a bone marrow transplant. However, I was not able to have one from a family member, so they had to find an unrelated potential donor. I was extremely lucky, because they quickly identified a donor who appeared to be a perfect match and I had my transplant on May 12 2021.
Like Stephen, lots of MDS patients can benefit from knowing their MDS sub-type
Share these stories and animations with doctors, patients and the public!
"Since then - says Stephen - I’ve had one or two minor issues, but the doctors have generally been extremely pleased with my progress, and I’m looking forward to the future with considerable optimism, thanks to the extraordinary team at King’s and my anonymous donor.
I joined the MDS Support Group almost as soon as I was diagnosed. I find it incredibly helpful, both as a source of comradeship, friendship and support via the network of fellow-patients (with both similar and different MDS sub-types) but also as a way of accessing the most expert and up-to-date advice and information about our condition and important related issues, such as Covid and vaccinations.
I would wholeheartedly recommend anyone who has been diagnosed themselves or who has a loved one with MDS to join our network."
MDS-RS: Simon Wilkes' Story
My sub-type of MDS is MDS RARS, now MDS-RS, diagnosed September 2013. On diagnosis, a Haematology Consultant gave me the news and a booklet to read. Utter shock.
The questions I had about the diagnosis did not enter my head until reading the booklet and unfortunately looking at Dr Google. I would advise not to look at google, but luckily that's where I found the MDS Support group!
It took me a couple of months to make that call to the group, where i spoke to Sophie for the first time. This was the best phone call I was to make: the knowledge Sophie had and the information given put a different perspective on my diagnosis.
I received a lot of valuable information from the group by joining the MDS Forum.
MDS SLD: Peter Roberston's Story
I was diagnosed with MDS in January 2018. My subtype is trisomy 8, refractory neutropenia. Under the 2016 classification I guess this is MDS single lineage dysplasia, specifically neutropenia.
It was actually quite easy for me to find out my status as my consultant explained everything to me at the time of my diagnosis.
As a scientist I had a bit of an advantage so I was able to understand the science behind my diagnosis quite easily. I also could read up about it in the scientific literature.
I hadn’t directly encountered anyone else who had MDS until I took part in one of the MDS Patient Support meetings.
I don’t think I have met anyone yet with my specific subtype. I do have a colleague who works at the same university as me who is a Prof specialising in MDS research and they were great to talk to following my diagnosis.
MDS del q5: Jacqui Warren's Story
I had MDS del q5 with TP53 mutation
I was diagnosed with MDS in April 2018 at the Nuffield private hospital in Leamington. I had two failed bone marrow biopsies at this hospital and didn’t find out my sub-type until I went to a centre of excellence, the Queen Elizabeth Hospital Birmingham as advised by Sophie Head of MDS UK.
This group has been extremely valuable to me with advice and support on my journey to transplant and after.
I have met people with the same subtype as myself online and a particular one in person whom I first met in at the Birmingham group meeting (as it turned out the only one before lockdown) we became firm friends and have supported each other on our journeys mine being SCT last June and her’s SCT last September this contact has been invaluable to me and still is.
I have need two DLI s for a relapse in my transplant and have had a very rough few months this year with my blood counts all dropping and my bone marrow be declared empty also a very nasty bout of pneumonia which I had nearly 5 weeks in hospital for until it was conquered. But with the care and support of the transplant team at the QE Birmingham my counts started to rise and my latest BMB showed solid remission.
My transplant buddy as I call her has been there for me all the way and I can’t thank her and this group enough for keeping me going. I have attached a photo of the two of us celebrating her 1st re-birthday ( we didn’t get to celebrate mine as I was in hospital)
I am and always will be extremely grateful to this group
Like Jacqui, lots of MDS patients can benefit from knowing their MDS sub-type
Share these stories and animations with doctors, patients and the public!
MDS with ring sideroblasts (MDS-RS): Richard Andrews
My MDS sub-type is MDS(RARS) Trichomy 8.
I was fortunate in that my referral, following an unrelated blood test, took only a few weeks. My referral was to the Haematology department of the RD&E hospital in Exeter where a lumbar puncture procedure confirmed the suspected MDS condition.
I received excellent advice and also had the advantage of picking up some MDS UK reading material, which helped enormously. My wife and I are members of the MDS UK Patient Support group (both nationally and through our newly formed South West group) and have found the opportunity to meet others, mainly by Zoom due to the Covid pandemic, extremely useful.
I’m afraid that I don’t ‘do’ social media, however, I will chase up my local MP, who owes me a response from months ago! The World Awareness Day initiative sounds like a great idea.
MDS-MLD: Suzanne McWilliams' Story
Originally I was diagnosed with RAEB (Refractory Anaemia with excess blasts)-intermediate 1.
However, as time went on, and all my care including Bone Marrow Biopsies were moved to the Christie, my diagnosis changed to MDS-RCMD (Refractory cytopenia with multilineage dysplasia).
I found out about my sub-type on discussions with my Consultant, after the Bone Marrow Biopsy. He mentioned the WHO had reclassified MDS subtypes.
What is the most important thing I had to give up since MDS? Well, in 1995 I started my Corporate Conference and Incentive travel Company (now a family business). Since diagnosis, the extensive travel to amazing places and 16 hr days, which I loved, are a thing of the past. I still work, but selectively and much, much shorter hours.
I am part of MDS UK to interact with people in similar situations and to learn. The group has been invaluable and I’ve learned so much!
