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Come to the Congress on MDS in Marseilles 3-6 May 2023 – (earlybird registration until March 7th)

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Advancing Research and Patient Care

 

The 17th International Congress on Myelodysplastic Syndromes (MDS 2023) will take place from 3-6 May 2023 in Marseille, France.
Come to the Congress in Marseille, where renowned international MDS experts will present and discuss the recent advances in myelodysplastic syndromes.

  • The congress will cover basic and translational research, diagnosis, prognosis, new therapies and patient experiences.
  • It will include several workshops and round tables in order to foster discussion.
  • High-level research results will be presented, selected from the abstracts submitted by colleagues.

For more than 20 years, every two years, the MDS International Meeting has been a milestone for those who are interested in myelodysplastic syndromes.

How to register

To register for MDS 2023 or to find out more click the blue button below

Find out more and register for MDS 2023 in Marseilles

‘What my body has taught me’ – by Marianne Elliot

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My body has taught me 

I am stronger than I realise 

And more fragile than I like.  

I can endure pain with courage  

And be reduced to tears by a virus.  

I am marvellous, miraculous, mysterious.  

My body has its own deep intelligence  

I carry my memories in my cells.  

I am constantly being born anew.  

I hold tight to fear and resistance.  

I breathe deeply and let go. 

My legs will carry me farther than I think I can walk. 

My heart will keep beating even when it is broken. 

My mouth will kiss, laugh, drink tea and eat chocolate. 

My skin will shiver with pleasure.  

My bones will tell the weather.  

My feet will find the path.  

My hands will soothe a crying child.  

And write a story that will make you cry.  

And pour you a glass of wine.  

And brush your hair.  

And stroke your cheek.  

And hold your hand.  

My body will chop wood.  

And carry water.  

My body understands the wisdom of rest.  

The beauty of stillness.  

The power of touch.  

The importance of dance.  

And that there is only this. Here. Now.  

My body understands joy, delight and play.  

My body knows what I am hungry for. 

My body has taught me to pay attention to my desires.  

To listen to my gut.  

To trust my appetites. 

My body has taught me I am human. 

I am here.  

I am beautiful.  

I am powerful.  

I am brave.  

I am scared.  

I am alive. 

And I am grateful. 

by Marianne Elliot  

MDS Patient Support

MDS Patient Support

MDS Patient Support

MDS Patient Support

MDS Patient Support

MDS Patient Support

MDS Patient Support

'What my body has taught me' was sent in by the wonderful Reverend Kes Grant.

Dedicate a star in memory of a loved one on the MDS UK Christmas Tree

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Dedicate a star in memory of a loved one

Join us this festive period and dedicate a star or light in memory of a loved one or add a dedication to someone special you are thinking about. Our stars symbolise hope, a loved one thinking of you and happiness.

While there's no obligation to donate when creating a dedication, it's easy to donate and we would truly appreciate it.

Simply, click on the tree, choose a star of your choice and make a donation. All money raised will support MDS UK and those living with the condition in the UK.
Wishing you a happy Christmas.

Support Gary Fielding running the Cardiff 10k for MDS UK

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Gary Fielding, will be competing in the Cardiff Bay 10K on 26 March 2023 to remember his grandad, Stanley Morris, and raise awareness of MDS. Gary, who lives in Cardiff now, grew up in Blackburn, Lancashire where he spent a lot of time with his grandfather Stanley.  Stanley’s MDS diagnosis took a long time and he was diagnosed at the age of 90.

My Grandad is my inspiration and motivation.

‘It was always special spending time with Grandad, his jokes would make me smile and he could
cheer you up at the darkest of times…he would be very proud of me for raising money for MDS UK.’

Gary Fielding and his grandfather Stanley who was diagnosed with MDS at 90

Gary started running during lockdown for his wellbeing. This will be his first competitive race, he expects it to be very emotional and exhausting but he will be thinking of his grandad every step of the way.

A huge thank you to Gary for doing something amazing for MDS UK

Help Gary raise funds for MDS UK in memory of his grandad





Donate via Gary Fielding's JustGiving

Rare Disease Day: 28th Feb 2023 – Take Part!

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28th February 2023 is Rare Diseases Day - Take part

Join in solidarity with the 300 million people around the world who have a rare disease.

What is Rare Disease Day?

Rare diseases (like MDS & CMML) and 6000 + diseases across the world often get misdiagnosed, forgotten or ignored. Rare Disease Day is a globally-coordinated movement that calls for action for people living with a rare disease to have equal opportunities in healthcare, access to diagnosis and therapies and social opportunity. There are 300 million people worldwide living with a rare disease. That's 5% of the global population.

MDS is a rare disease and a rarer blood cancer

MDS is 'the forgotten blood cancer'. It is often not called a cancer and therefore not captured in the guidelines developed by the health authorities. It's also difficult to diagnose so is often missed or misdiagnosed.  As with all cancers, fast action enables faster diagnosis and better treatment. (See Spot the Symptoms for MDS signs and symptoms what to do if you see them.) By joining in solidarity with Rare Diseases Day, we can all raise awareness of MDS and the 6000 other rare diseases across the world.

How you can take part

In solidarity with 300 million people across the world who have a rare disease, light or decorate your home with the Rare Disease Day colours at 7 PM your local time on 28 February 2023.

Rare Disease Day February 28th 2023 - #lightupforrare

Use fairy lights, candles, disco lamps, decorations, whatever you like

  • Take a photo and post it on social media using the hashtags #lightupforrare #rarediseaseday #globalchainoflights.
  • Or post your picture on our Facebook group.
  • Or you could simply wear colourful clothes (or your MDS UK T-shirt if you have one!) - then share your photo on social media using the hashtag #shareyourcolours

 

Light up for Rare - Tuesday February 28th 2023


Rare diseases get forgotten

"Neil had a stem cell transplant scheduled for early March. Then UCLH checked his ferritin levels. If you’re having regular transfusions your iron levels should be monitored, Neil’s weren’t. After a year of iron-rich blood transfusions these were found to be stratospheric, so the transplant was put on the back burner."

Read Neil's story >

What was your experience? Send us your story

  • We'd love to hear your experience of MDS or CMML. Send us your stories to info@mdspatientsupport.org.uk for our Patient Stories page
  • Or share your MDS story using the hashtags #rarediseaseday to show your support for the campaign.

Watch the recorded webinar on the REPAIR-MDS Clinical Trial and Low-risk MDS

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Below is a recorded zoom presentation about Low-risk MDS & the REPAIR-MDS clinical trial. The discussion was hosted by the MDS Patient Support Group with presentations by the clinical trial investigators Dr Manoj Raghavan, Dr Stephen Jenkins, Dr Farhat Khanim and Professor Chris Bunce. The video gives valuable information about the trial and its potential benefits for patients with low-risk MDS.

The topics include:

  • the current treatment options for Low-Risk MDS
  • a description of the REPAIR-MDS clinical trial and the general clinical trial processes
  • explanations of: eligibility for the trial, expectations, treatment periods, schedule of events, importance of completing the trial and where to find out about the progress of the trial.
  • The presentation was followed by Q&As with a large group of MDS patients.

 

 

Low-risk MDS & the REPAIR-MDS clinical trial


The meeting was held on 27th January 2023 and was chaired by Sophie Wintrich, CEO and Trustee of MDS UK Patient Support Group. For more on the specialist speakers, see their profiles below.

Specialist speakers

Dr Pramila Krishnamurthy, Consultant Haematologist King's College Hospital, London

Dr Manoj Raghavan is Co-Chief Investigator on the REPAIR-MDS trial in low/ intermediate risk MDS. He is a consultant haematologist based at the Centre for Clinical Haematology.

MDS Patient Support

Dr Stephen Jenkins is Co-Chief Investigator on the REPAIR-MDS trial and consultant haematologist at Russells Hall Hospital, Dudley.

Dr Farhat Khanim is Co-investigator on the REPAIR-MDS trial and is a translational cancer biologist at the School of Biosciences University of Birmingham.

Professor Chris Bunce is Professor of Translational Cancer Biology and Head of Research. He directs a translational research group dedicated to the development of novel therapies for leukaemias and lymphomas at the School of Biosciences University of Birmingham

Further information about the REPAIR-MDS Clinical Trial

  • Improving outcomes for people with MDS - an article by Dr Stephen Jenkins on the Blood Cancer UK website with a very clear explanation of the REPAIR-MDS clinical trial.

  • REPAIR-MDS Clinical Trial -  The website of the University of Warwick, Clinical Trials Unit  with up-to-date information about the trial and contact details of the trial team. 
  • ClinicalTrials.gov -  Updated details of the trial on ClinicalTrials.gov website 
  • ISRCTN registration of REPAIR-MDS trial  - Entry of the REPAIR-MDS trial in the ISRCTN registry. (The ISRCTN registry is a primary clinical trial registry recognised by WHO and ICMJE)

Get extra help if there are power cuts – register now

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MDS Patient Support

The cold periods this winter bring the possibility of power-cuts across the country.  If you have a long-term illness (like MDS or CMML), the energy networks can offer you extra help and support via a free service called the Priority Services Register.

The Priority Services Register

In the event of a power-cut, those on the Priority Services Register can expect tailored support – including home visits, hot meals, updated information via text and voice messages and more (help available varies depending on your circumstances and what support is offered from your local network operator.)

How to sign up to the Priority Services Register

To sign up, you first have to contact your local energy network operator. (Your local operator is not the same as your supplier.) Each network operator keeps their own Priority Services Register. 

How to find your energy network operator

The Energy Network Association's website has a useful 'Find my network operator' tool to help you find your local energy network operator easily. Once you've found your energy network operator, you contact them to sign up to their Priority Services Register.





Find my energy network operator

What help is available from the Priority Services Register?

The Energy Networks Association tells you more about the Priority Services Register on their website.

Help you can get through the Priority Services Register

The type of help available will vary, depending on your circumstances and the support from your local network operator. All network operators can offer:

  • advance notice of planned power cuts. If you rely on your energy supply for medical reasons your network operator can tell you about planned power cuts. For example, when there are planned engineering works. Being on a Priority Services Register won’t mean your electricity supply will be restored more quickly or guarantee a power supply if there is a power cut.
  • priority support in an emergency. Network operators can provide heating and cooking facilities or accommodation and direct contact and updates, such as by phone.
  • an identification and password scheme. This could include arranging a password or pictures only you and your local network operator will know. The network operator will use these forms of identification so can feel confident they are who they say they are if they need to visit or contact you.

Being registered for priority services does not guarantee a continuous supply of energy. As supply interruptions can happen all year round, it’s important you are prepared and know what to do if they happen.

Power-cut? Remember you can call 105

If there's a power-cut you can also call 105 to report or get information about power-cuts in your local area. 105 is free of charge and will put you through to your local network operator who can give you help and advice.  This service is available to people in England, Scotland and Wales. You can find out more from their website https://www.powercut105.com

Other ways to prepare for a power-cut

• Keep torches, ready to use during the night
• Keep a fully charged mobile phone in case you need updates and to contact others – a fully charged portable charger would also be handy
• Ensure warm clothes and blankets are accessible for everyone
• Keep food accessible that doesn’t need heating

Please also remember the vulnerable in your neighbourhood who may not have access to the internet or do not use a mobile or landline. Keep them updated when you see them, knock on their door when you don’t, and bring extra supplies and warm food if you can. Be safe all, and take care.

QoL (Quality of Life ) in High-Risk MDS & AML: A recorded zoom session with specialist consultants & MDS UK patients

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On December 15th 2022, Dr Pramila Krishnamurthy, and her colleagues Dr Beth Payne, and Dr Ian Thomas, led this valuable session introducing their research project on QoL (Quality of Life ) in High-Risk MDS & AML to a group of MDS UK patients. The presentation was followed by Q&As.

Below is a recording of that session. It was chaired by Sophie Wintrich, CEO and Trustee of MDS UK Patient Support Group. The recording is approximately 1hr 10m. For more on the specialist speakers, see their profiles below.


Specialist speakers

Dr Pramila Krishnamurthy, Consultant Haematologist King's College Hospital, London

Dr Pramila Krishnamurthy is a haematology consultant at King’s College Hospital, London. She specialises in AML, MDS and BMT. She was awarded the John Goldman Leukaemia UK Fellowship in 2021.

Dr Beth Payne, Consultant Haematologist UCLH

Dr Beth Payne is haematology consultant at UCLH and specialises in the treatment of MDS and bone marrow failure. She undertook her PhD at the Dana-Farber Cancer Institute, Harvard Medical School in Boston, USA studying molecular aspects of MDS and AML and ribosomal protein mediated disorders. Dr Payne was awarded an Advanced Clinician Scientist Fellowship by Cancer Research UK. 

Dr Ian Thomas is a Research Fellow within the Blood Cancer group, at the UKCRC Registered Centre for Trials Research at Cardiff University. He has worked on international clinical trials, predominantly in acute myeloid leukaemia, since 2007. 

27th January – Patient meeting on Low-risk MDS and Repair MDS with Professor Manoj Raghavan & colleagues

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Professor Manoj Raghavan, Consultant haematologist, University Hospital Birmingham and a team of specialists involved in Repair MDS, will be leading a presentation via Zoom on Low-Risk MDS. The topics covered will include;

  • the standard treatments available
  • the trials for this type of MDS
  • the new clinical trial Repair MDS, using re-purposed drugs.

The meeting would be of interest to patients with Low-Risk MDS, 'watch & wait' or pre-MDS. This meeting will be recorded and available on the website later.

Meeting details

Date:     Friday 27th January
Time:    12 noon to 2 pm
Where:  Online, Zoom Call

To register in advance for this meeting click on the red button below. After registering, you'll receive a confirmation email with information about how to join the meeting.

Subtitles on Zoom for the hard of hearing 

We are aware that if you have a hearing impairment, you may have avoided registering for our Zoom meetings because you were worried you wouldn’t be able to hear what people were saying.

With the latest Zoom updates, MDS UK is now able to offer live subtitles at all our Zoom online meetings. It isn't perfect, as all of you used to using subtitles will know, because it depends on the clarity of each speaker! But it will help you to follow the conversations and join in the discussion.

If you would like to use this service, please make sure you request it in the questions and comments when you register for the Zoom meeting. Our Office Manager, Caroline, will then be able to set it up in advance and guide you through the process on the day of the meeting. It’s quite straightforward to set up and we hope it will enable more of you to join us.

Getting used to Zoom

It doesn't seem likely we'll be able to resume face-to-face meetings for a while yet, so we're continuing our virtual meetings on Zoom (as we know how important patient to patient contact is for everyone.) Even when face-to face meetings resume, we aim to maintain some virtual meetings as well, as these have attracted new members who had not come to face-to-face meetings previously. 

Many patients have already embraced Zoom (or something similar) in order to stay in touch with family members during the lockdown. If you haven't, please contact us.  If you are a first time user of video call – please don’t worry as we will sort out any technical issues at the start of each meeting.

If you have not contacted the MDS UK Patient Support Group before and would like to receive a full Patient Information Pack, please contact our Main Office.

 

MDS UK Main Office

0207 733 7558

 

Could you be a patient / carer representative for King’s Health Partners Haematology?

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King's Health Partners Haematology are looking for two patient/carer representatives to sit on the KHP Haematology programme board. Interested patients/carers should register their interest by contacting becky.barnes@kcl.ac.uk / 07773 147379 by 31st January 2023. 

"We are looking for two enthusiastic and committed patient or carer representatives to be part of the Kings Health Partners Haematology Programme Board.

Our Haematology Clinical Academic partnership is developing a world-leading patient-centred Haematology programme that takes the latest research from bench-to-bedside, supporting and training healthcare professionals to provide the best possible care for people with blood diseases."

Read more

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