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In memoriam of Fiona Pirilla

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Fiona_Mamas_Pirilla

Fiona and Mamas

Fiona and I met when we both responded to a meeting set up to see if a patient support group dedicated to MDS was needed.

During this meeting Professor Mufti gave an interesting talk about MDS. At the end he asked for questions or comments, the microphone came to me and I said to the Professor that I was more than the sum of my blood work, that’s why a patient support group would be a good thing. Fiona came and found me in the lunch break and told me she liked what I said and agreed. There began a fruitful friendship that benefitted us both over the years.

The meeting ended with a call for volunteers to form a committee to get the support group off the ground. Fiona and I both volunteered. One other woman called Sharon volunteered too. Committee meetings were challenging affairs. Discussions about what the support group should do took up lots of time, as did setting up all the policies and procedures necessary for a charity. Finally, David Hall took the reins and steered us through the process.

Those first committee meetings weren’t easy. Fiona, Sharon, and I would have a drink together after and talk about the charity as we saw it.  Sharon wasn’t known to mince her words and Fiona and I were no push overs either, we kept going despite the challenges until the charity was set up with a wholistic framework of supporting the whole patient and their carers and families. There have been many people who have given so much of themselves over the years to MDS UK. We stand on the shoulders of these giants who went before us. Fiona has now joined their ranks.

Fiona showed true grit and continued to volunteer, eventually taking on the role of secretary. She maintained her committee membership until she bowed out when she needed to have her stem cell transplant two years ago.

Fiona as Secretary in the committee (Newsletter Issue 2/2012)

Fiona's Travel Tips article (Newsletter Issue 5/2014)

One of my fondest memories of Fiona came when she visited me in my office in Greenwich. I didn’t know her well at the time, she came in and I got up to welcome her and my colleagues laughed, I only came up to her navel! I took her for a meal in the greasy spoon over the road, at that time, I had no idea what a foodie she was - whatever she thought of the place she didn’t say. It was over lunch that we discovered our shared love of sport. Fiona was a highly accomplished basketball player, she was team captain for England and led them to victory in the 1991 Commonwealth Games in Edinburgh. Her old teammates described her as “a lovely shot, a formidable rebounder and someone who always demonstrated great leadership and kindness.”

Fiona was always immaculately turned out and always looked elegant. She was beautiful inside and out, she was also a highflyer in her specialised field of work. She was one of our MDS experts and her answers to those recently diagnosed carried more weight. She befriended many people through the online forums, Zoom meetings and Facebook groups. All who received a reply from her were reassured by her measured response.

Here are some words that people have said about “Our Fiona”:
Courageous
Beautiful
Kind
Funny
Always up for doing something silly
Organised
Professional
Strong
Caring
Amazingly crazy
Diplomatic
Inspirational

This list could go on and on and I’m sure those who knew her will have other words.

When she met Mamas a few new words came into her life and those were loving husband. They were soulmates and enjoyed a lovely life despite illnesses and life not being fair. They both lent on each other and it was a joy to watch their relationship from afar.

One of our last meetings before the pandemic hit was very memorable for different reasons. A few of us had gone into a nearby pub. We managed to get a table at the top of a narrow steep staircase, at one point a very drunk businessman came out of the loo with his flies open, which I noticed and nodded to Fiona. How we giggled! He found the stairs and promptly slid all the way down them ending in a heap at the bottom. Fiona as quick as a flash said, “should’ve taken more water with it.”

When Fiona told me her very sad news, I like many of her friends and family, was gutted. She had been through so much and just kept going. The thought of her slipping away was a horrible one. I sent her little messages to encourage and cheer her. One of the last ones I sent said “if someone isn’t social distancing from you, just fart” She thought that was very funny. I also sent her this beautiful poem which she told me gave her comfort.

And You Held Me

and you held me and there were no words
and there was no time and you held me
and there was only wanting and
being held and being filled with wanting
and I was nothing but letting go
and being held
and there were no words and there
needed to be no words
and there was no terror  only stillness
and I was wanting nothing and
it was fullness and it was like aching for God
and it was touch and warmth and
darkness and no time and no words and we flowed
and I flowed and I was not empty
and I was given up to the dark and
in the darkness I was not lost
and the wanting was like fullness and I could
hardly hold it and I was held and
you were dark and warm and without time and
without words and you held me

Janet Morley

 

Fiona was just a natural at everything she did. MDS UK will be worse off for not having her immense knowledge and strength behind it. She set MDS UK as a donation invitation for her birthday in February. She has done the same for her funeral and asked for no flowers. Even as she was dying, she was thinking of all those newly diagnosed and wanting to make sure MDS UK remained a vital lifeline. The money that will be raised in Fiona’s memory will help continue the charities work until hopefully one day we find a cure.

Our thoughts and prayers remain with Mamas and the family, in the UK, and Cyprus (which she loved so much), as well as all the friends, basket-ball crowd and former colleagues.

 

I think this quote sums Fiona up “when you were born, you cried, and the world rejoiced. Live your life so that when you die, the world cries and you rejoice!”

Written by our good friend, MDS UK committee member Reverend Kes Grant.
On behalf of all of us at MDS UK.
If you wish to donate to MDS UK in Fiona's memory please follow this link:

https://fionapirilla.muchloved.com/

Most vulnerable to be offered Spring 2023 COVID-19 booster

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The Joint Committee on Vaccination and Immunisation (JCVI) has confirmed its advice for a 2023 spring coronavirus (COVID-19) booster programme offering a vaccine top-up for over-75s, immunosuppressed and residents in care homes for older adults.

In England

Spring 2023 Covid-19 booster programme

  • In England, Spring boosters will start on Monday 17 April 2023 and end on Friday 30 June 2023.
  • The national booking system will open on Wednesday 5 April 2023.

 

The GOV.UK website states

You should be offered an appointment between April and June, with those at highest risk being called in first. You will be invited to have your booster around 6 months from your last dose but you can have it from 3 months. If you are turning 75 years of age between April and June, you will be called for vaccination during the campaign, you do not have to wait for your birthday.

For more information visit the gov.uk page on the Covid-19 Spring booster programme in England.   or click below to read the leaflet

Leaflet Guide to Spring 2023 COVID -19 Booster for England

 

In Scotland

Spring 2023 Covid-19 booster programme

  • In Scotland, if you're eligible, spring booster appointments are being offered between 11 April and 30 June 2023.

 

For Scotland the NHS Inform website states

The timing of your appointment is based on clinical advice and the gap since your last dose. This is to maximise your protection over spring and summer. If you need to rearrange your appointment, you may need to choose a later date. Please ensure your rearranged appointment is after 11 April. More appointments will be added in the coming weeks. If you can't find a suitable appointment now, you can check the online portal or phone the helpline at a later date.

For more information follow the link below to download the Leaflet Guide for Scotland

Leaflet Guide to Spring 2023 COVID -19 Booster for Scotland

 

Wales and Northern Ireland

  • Wales and Northern Ireland, dates are likely to be similar – but no confirmation has yet been sent yet.
  • There will also be an Autumn 2023 booster – that will be delivered in a similar way to this upcoming Spring 2023 booster.

Covid 19 UK Inquiry into the 500k Forgotten immunocompromised patients

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The APPG for Vulnerable Groups to Pandemics UK Inquiry has released their report this month into the Forgotten 500k Immunocompromised Patients.

Evusheld for the UK, a patient campaigning group who working tirelessly to get Evusheld available in the UK, said on their #forgotten500k Facebook group

"This is one of the most significant documents produced to date as it really highlights the multiple and significant failures by the Government in its handling of the pandemic.  The APPG will be sending this document out to all MP's across the house and also the DHSC. Please help us spread this document far and wide. We need you to share this with your MP's too, Media, Charities, Clinicians and anyone you think needs to know. We need to get it out there."

Click the title or image below to download the report.

MDS UK endorses the statement made by Evusheld for the UK and continues to try to raise awareness for the need for Evusheld, a Covid-19 preventative treatment for people who are immunocompromised.

Of the half a million immunocompromised people in the UK, many are still shielding,  still in isolation, unable to work, see friends or hug loved ones.  Evusheld, the treatment that could help protect them against Covid, has been denied to them by the UK Government, despite being approved in 32 other countries.

MDS and CMML patients are still forced to be extremely cautious with no particular reassurance, nor any further research available to show that it is safe for MDS and CMML patients to be exposed to COVID-19.

Instead, our patients just hear about more COVID-19 cases amongst their friends, neighbours, colleagues, families. The relative health of MDS and CMML patients is too fragile to take any risks. Surely, a drug like Evusheld would offer some extra peace of mind for groups of patients who have put their lives on hold for the last 3 years. For some high-risk MDS patients, whose prognosis can be even less than 3 years – it is utterly unfair – when an improvement could be so easily available.

You can help

From the Get Evusheld website

AstraZeneca’s Evusheld is a preventative (“prophylactic”) treatment for Covid, approved for UK use on the 17th March 2022. However, there has been no progress since then on the drug’s accessibility on the NHS or privately. This has prolonged the shielding imposed on so many of us across the UK. Our group exists for one purpose: to get this drug introduced in the UK with access for all those who need it.

Visit www.getevusheld.uk/500k  to make the Government act today.

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.

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