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Awards and Commendations!

allyboyle-awardAlly Boyle – who won the Anthony Nolan Award for Best Recruiter of the Year – at the event on the 4th November.

Ally was diagnosed with MDS a few years ago – and this has not stopped him from getting on with things. On the contrary!

 

Ally is a fire fighter by profession in Scotland and has done an amazing work with his colleagues from the Scottish Fire and Rescue Service and Strathclyde Fire and Rescue – to  recruit stem cell donors for Anthony Nolan.

Here is what he says on his Facebook page:
Fabulous and inspiring evening at Anthony Nolan Awards and delighted to report that we won! Obviously none of this is about recognition but I am very proud of what has been achieved. From the grimmest news on my diagnosis to the knowledge we are saving lives. The credit belongs to the Core Group Andrew Watt, Ian McMeekin, Paul Devlin, Cathy Barlow, Siobhan Hynes, Hamish Macrae, Mark Conlon and our amazing volunteers. 5,000 recruited so far so here’s to the next 5,000 and beyond!
And this is from the Anthony Nolan website:
http://www.anthonynolan.org/Hidden/ANSAS.aspx

Wonderful stuff Ally and team!  Thank you on behalf of all MDS patients in need of a transplant.


Berger-anthonynolanawardsAnd the next amazing people are Sharon Berger’s children Jonni and Caz, who have been especially commended for BAME Advocate of the Year.
Jonni and Caz have done so much for the recruitment of stem cell donors, after it was decided that their Mum Sharon (who is also our treasurer) needed an urgent bone marrow transplant – see our previous news item on our website).
Through their efforts, they radically changed the number of jewish stem cell donors in the UK – and even further afield.

Here is what Anthony Nolan says about them:
Earlier this year, Jonni and Caroline launched a campaign to recruit more Jewish donors to Anthony Nolan’s register when they were told that their mother, Sharon, needed a bone marrow transplant. They appealed to the Jewish media and twitter community using the hashtag #Spit4Mum.  In the first four months of 2013, over 1,000 Jewish people joined the Anthony Nolan register compared with only 100 during the same period in 2012.

 

Sharon was diagnosed with myelodysplastic syndrome and was told that she needed an urgent bone marrow transplant to survive. Finding a matching donor was more difficult for Sharon because Jewish people are under-represented on the bone marrow donor register and a donor is most likely to be someone with the same ethnic background as the recipient. Sharon had a bone marrow transplant in July and is recovering well.

Caroline says, “I’m very proud to have been nominated and it is humbling that the campaign has been recognised. I think the award should go to my mum who has bravely tackled blood cancer for the past year. I only hope that the campaign helps find matches for other people facing a similar situation.  Without the incredible work that Anthony Nolan does, my mum wouldn’t have found the hero who saved her life. There is a Jewish saying that ‘to save one life is as if you have saved the world’. That is what Anthony Nolan means to me.”

Jonni adds, “I am pleased to have been able to increase the number of Jewish donors on the register as well as to have raised awareness about the lack of minority ethnic donors on the stem cell register through our #Spit4Mum campaign. Whilst the initial aim was to help my Mum Sharon, who thankfully had a stem cell transplant recently, there is also the satisfaction that I have significantly increased the number of potential donors on the register for everyone in need of a lifesaving transplant in the future.”

Henny Braund, Chief Executive at Anthony Nolan, says, “Jonni and Caroline’s campaign to recruit more Jewish donors to the register has been a huge success and has had a considerable impact on the number of Jewish donors joining the register. We were all so pleased when we heard that their mother, Sharon, had found a donor for her bone marrow transplant. Raising awareness is key to recruiting more donors and it is down to the hard work of supporters like Jonni and Caroline that we are able to help provide lifesaving transplants for people like Sharon.

http://www.anthonynolan.org/News/CAMPAIGN-FOR-JEWISH-DONORS-SHORTLISTED-FOR-NATIONA.aspx?year=2013&month=11

Thank you to both of you Jonni and Caz ! Bone marrow failure patients need more people like you to raise the awareness amongst ethnic communities – where there is a desperate need for more donors to come forward! Fantastic work.


Stem Cell transplantation discussion in Parliament

Stem Cell transplantation discussion in Parliament

On the 6th September, the APPG (All Party Parliamentary Group) on Stem Cell Transplantation had a meeting where the need for stem cell donors from ethnic minorities was discussed.
Jonni Berger gave a great talk on his personal perspective as the son of an ethnic minority patient (Sharon Berger) who needed an urgent stem cell transplant at the beginning of 2013.
You can read more on Sharon Berger here: https://mdspatientsupport.org.uk/sharon-berger-transplant-update/

Please see Jonni’s talk and those of Anthony Nolan and Great Ormond Street Hospital by clicking the links below:

http://ukstemcell.org/news-events/

6th September 2013

The minutes of the September meeting are available to download here. Please click on the speaker’s name to download a copy of their presentation.

Orin Lewis, National BAME Transplant Alliance

Ann O’Leary, Anthony Nolan

Dr Paul Veys, Great Ormond Street Hospital

Spit4Mum – Jonni Berger

A short video book with press cuttings of the #spit4mum campaign is also available to download here.

 

About APPG on Stem Cell Transplantation

The All-Party Parliamentary Group on Stem Cell Transplantation is a group of parliamentarians with an interest in the use and development of stem cell transplantation in the UK. The aims of the group are to:

• Inform parliamentarians about the use of stem cell transplantation in saving lives
• Facilitate debate and scrutiny on the collection and use of adult stem cells and umbilical cord blood in the UK
• Promote the widespread collection and storage of cord blood
• Promote the expansion of stem cell donation in the UK

The APPG is currently co-chaired by Mark Tami MP and David Burrowes MP. Information about the composition of the group can be found here. Please direct queries about the APPG and its work to Iana Vidal at iana.vidal@anthonynolan.org.


Bone Marrow Transplant Blogs

What happens before, during and after a bone marrow transplant?

Updated on 24/09/2018

If you are interested in learning more about what happens before, during and after a bone marrow transplant - we have different MDS transplant blogs to share with you:

Emma Payne (Blog): https://emmafightsmds.wordpress.com/

Chris Spencer (Blog): http://chrisspencer416.blogspot.co.uk

Revel Rev (Blog:) https://revrebel.blogspot.com

Evie McClean(YouTube): Evie McClean YouTube Channel

Jayne Snell (Twitter account):@JayneMSnell

All blogs are quite different in style - but all helpful and well written. Thanks to all for maintaining the sites and for carrying on writing.

Emma Paine:

Emma had a first stem cell transplant in 2011 and recovered well. But her MDS came back in 2015 and she needed a second transplant.
Funding for second transplants has been revised in the UK due to “cost-effectiveness” issues and hospitals all over the UK need to seek special funding requests for those patients (IFR=Individual Funding Requests)

Emma battled to be granted a further chance to live and she managed to have a second transplant in January 2016. You can read all about her and her campaign to get the second transplant funded in her blog Emma’s Fight against MDS

Jayne Snell:

Jayne was diagnosed with MDS in early 2011 and had her transplant in 2012, when it was determined that her condition was at high risk of progressing to AML - Acute Myeloid Leukaemia.

She introduces her blog like this: "I originally started this blog for my family and friends, so that I could stay in touch with them throughout my periods of isolation.  However, it turned into something huge!  It was my support system, the love and the care that I received through this blog was like a blanket of protection and I really cant thank you all enough for that.

This is NOT a sad story.  I hope this blog helps others who are about to start treatment.  Just stay focussed on getting the cure, do not lose sight of that, and remember that everything that happens to you through your journey is one step closer to wellness."
Jayne's Twitter Account

Chris Spencer:

We stumbled across Chris's blog via the Anthony Nolan Facebook page.

We don't know him personally - but thought his blog may also be helpful to any other MDS patient out there.

My Diary

Rebel Rev:

Where angels fear to tread

The ups and downs of life as a former hospital chaplain and rare blood cancer sufferer.
I was diagnosed with MDS (Myelo Dysplastic Syndrome) in 2000. I had a bone marrow transplant in Oct 2016. Since then I’ve been living with extensive GVHD (Graft Verses Host Disease).

Hope you find something that helps in these blogs.

Evie McClean

Evie McClean is a member of MDS UK Patients Support. 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 Evie received a bone marrow transplant.
You can watch here some of Evie’s amazing video clips, where she tells all about her favourite things and the ways she and her family have learned to live with her illness.

The following long-standing blogs were written by patients who sadly passed away due to severe infections some time after their transplant.

We still encourage you to read these excellent blogs, which are full really useful information on how to prepare yourself – and what the day to day will be like in hospital.

And please please please – do remember that EVERY transplant experience is unique.

This is also why we decided to keep these blogs for people to read. Similar people have gone on to have very successful transplants.

We also want to pay tribute to these patients who were amazing members and supporters of MDS UK – and their families, friends and colleagues, who are staying in touch with us. Thank you all.

Brenda Goodland:

After many years living with a very stable form of MDS, Brenda's MDS progressed and she underwent a stem-cell transplant procedure.
The donor was her sister Heather (left in the picture  below), but Brenda's condition returned. Brenda sadly passed away on the 30th of August 2017.  https://brendagoodland57.wordpress.com/

Richard Barker

This is the “MDS in the Family” blog, which was kept by father and daughter team Roz and Richard Barker.
http://mds-in-the-family.blogspot.co.uk/
Roz and Richard started this blog when Roz (daughter) was diagnosed with MDS.  She then proceeded to have a bone marrow transplant – and is now doing very well.
Richard (father) was diagnosed shortly after Roz’s transplant,  and saddly passed away in 2015,  five years after his diagnosis. Richard was able to see one son married, celebrated his grandson passing his first GCSE and his granddaughter passing many ballet exams.

Glyn Jones

Glyn was diagnosed with MDS on 8th August 2014 and sadly passed away in 2016.
He wrote a very comprehensive blog about his experience as an MDS patient and campaigner.
Read more: http://glyn.webnode.com/

Please remember that MDS patient's treatments and experiences will vary from person to person and that response to a bone marrow transplant relies on many different parameters and variables.
ALWAYS talk to your haematologist or nurse specialist if you have ANY clinical questions or issues.

Please be aware that MDS is NOT considered to be a genetic condition that runs in families. However - there are some very rare occurrences, where more than 1 family member will develop MDS.  In those situations please make particularly sure you are treated in a MDS Centre of Excellence.  This will not only benefit you, as the monitoring will be very thorough, but you will also assist researchers to better understand the nature and perhaps causes of this disease.


Newsletter – Issue 4

Our next Newsletter is now out.
All members should have received their paper copies by 5th October 2013.

All clinical staff on our database will have received a stock of newsletters by 7th October 2013.

Click on link here:  https://mdspatientsupport.org.uk/what-is-mds/newsletter/

 

Should you NOT have received your copy or stock, please contact us with:

Name
Address
Tel number
Number of copies required

Patients and family members:
If you have recently moved homes, please update us with your new contact details.

Clinical staff:
If you have changed jobs, please let us know – please also tell us who has taken over in our previous hospital – so we update our clinical contacts database.

Thank you all for your kind cooperation


Shingles/varicella vaccine – urgent update

Urgent Clarification on shingles/varicella vaccine policy for MDS patients

MDS specialists have issued the following advice regarding shingles vaccine:

 

“Current advice from the UK MDS Forum is not to give the Live Varicella Vaccine to patients with MDS.”

You can read further information on the topic, on the UK MDS Forum webpage (the specialist website) here:
http://www.ukmdsforum.org/

If you are due this vaccine – or if your GP is mentioning it – please refer them to the website above, where they will be able to read further details – or ask for clarifications if needed.

 


MDS Factsheet – for GP’s

This is a Factsheet for General Practitioners (GP's) - designed to help them spot signs of POTENTIAL cases of MDS amongst their patients.

MDS GP FACTSHEET

MDS is a rare condition - and currently, the average GP is unlikely to encounter more than 1 or 2 cases of MDS every 10 years.

A GP is not able to diagnose MDS - but they can SUSPECT that someone might have a type of bone marrow failure or MDS.

A GP has to refer a patient with consistent abnormal blood results to a haematologist.
The sooner a patient is properly referred to a haematologist, the better, so that if necessary, treatment can start - or at least the patient can be actively monitored.

Many conditions can cause anaemia - and the GP needs therefore to rule out more common causes before suspecting a bone marrow failure/MDS.This Factsheet will help guide them with regards to a speedy referral if needed - and will raise their awareness of MDS.

As many of you have experienced - as a patient,  you sometimes end up knowing more about MDS than your GP.
This is not unusual - a GP cannot always be precisely informed about all rare disorders. But this GP Factsheet will help a little.

MDS Patients and family members - please take a copy of this MDS GP Factsheet and hand it to your local GP.
Encourage your friends to do the same.

Too many patients are still diagnosed too late - or suffer from unexplained symptoms of fatigue or recurrent infections for too long. Help us raise better awareness amongst these very important physicians.

 

This GP Factsheet is the product of an international working group of MDS patient groups, comprising of:

AA&MDS International Foundation - ABRALE - AEAL - AIL - CCM - MDS Canada

MDS DK - MDS Foundation - MDS IG - MDS Slovenia - MDS UK

Special Thanks to the committee of MDS physicians working together with AA&MDS Intl Foundation for their work on this Factsheet

Many thanks also to Celgene for supporting the international working group

Factsheet logo

 

MDS UK May 2018 Newsletter

Read the latest news on our Newsletter. If you haven't received it, please contact us.


Survey time for BMT patients, families and friends

SURVEY time

Calling all patients and their families who :

– have had a bone marrow transplant in the past

– are currently undergoing a bone marrow transplant

– are scheduled for a bone marrow transplant

The bone marrow registry organisation Anthony Nolan wants to find out more about the experiences of patients and their families going through the transplant process, and the information and support that’s available to them.

To help out please access answer the survey via the link below – takes about 15 minutes:

http://survey.opinionhealth.co.uk/uc/main/5e0d/?a=EL

They are looking for another 20 participants and would like to hear from MDS patients.  The survey is likely to stay open until Friday 16/08/13.

Your participation will help their campaigning work and the work of their patient team.

Thank you.


Australian Patient Support – MDS Newsletter

We are in regular touch with our colleagues from the Leukaemia Foundation in Australia.

They published a great newsletter recently – dedicated to MDS – and told us:

“We have a story on a lady who has been lobbying the Australian Government to get lenalidomide funded on a Pharmaceutical Benefit Scheme (PBS) similar to your NICE which may be of interest.”

 http://www.leukaemia.org.au/web/aboutdiseases/related_newsletters.php

Australia has a system not too dissimilar to our NICE – and often struggles with the same restrictions.

The issue mentioned in one of the articles about the cost of lenalidomide is being looked at in the UK at the moment, as we are hoping to have a Patient Access Scheme put in place for this drug – the same as for Myeloma.
We are encouraging all parties involved in setting up this scheme to cooperate and find a solution to make this drug accessible in the future to all transfusion dependent del 5q patients who need it.

Currently, lenalidomide is available through the Cancer Drug Fund – until June 2014, when the Value Based Pricing will start being used.
We will post further news as soon as possible.


Guardian seeks cancer patient contributions

The Guardian newspaper is calling for cancer patients to share their experience of life after cancer.

Please do consider submitting your story – as it will help raise awareness of MDS amongst the general population and possibly GP’s.  This is a great opportunity to reach main stream media.
Please find article below – and link to actual Guardian page/website.
Thank you.

http://www.theguardian.com/society/2013/aug/05/living-with-cancer-your-stories

Living with cancer: how has it changed your life?
Share your photographs, videos and stories of life following cancer and its treatment

There are two million people living with or beyond cancer in the UK. This figure is set to rise to four million by 2030, according to Macmillan. With improved diagnosis and the different types of treatment and care available, more people than ever are surviving cancer.

But the impact of the disease does not stop when treatment is over. The long-term effects of cancer and its treatment are many and varied. For some, cancer and/or its treatment can trigger physical changes. For others, the experience can render them unable to work or return to the life they had pre-cancer. It can lead people to a shift in priorities, bring new insights, or cause them to live a completely different life.

As part of our series on living with cancer, we’re asking anyone who has experienced it to share their photos, videos and stories.

We’d like to know how your life has changed since you were diagnosed with cancer. Did you take that holiday you always dreamed of? Have you met anyone new who has had an impact on you? Are you spending more time with family or friends? Have you taken up a new hobby? Or have you got a new job?

To help us tell your story and give people a glimpse into a life affected by the disease, please share a photo, a video and/or some text to describe your post-cancer experience. As space is limited, please tell us about one particular experience that has changed your life significantly.

Click on link below to access the article online – and submit your story:

http://www.theguardian.com/society/2013/aug/05/living-with-cancer-your-stories


King’s 100 Artworks Auction

KCH centenary logo

Do you or a close relative paint or sculpt or create other forms of art?
We’d like to hear from you please.

A group of King’s nurses, patients and local people are organising an auction of 100 artworks to celebrate 100 years of King’s in Camberwell and the rich artistic heritage of the local area.

So far they have collected 20 artworks from talented patients and staff, well-established local artists and internationally well-known artists such as Maggie Hambling. All submissions are welcome – the closing date is the end of September.

The auction is being supported by South London auction house Rosebery’s, and the full catalogue will be available on their website in the month before the auction.

You’ll be able to bid for artworks from:

– Maggie Hambling
– Janet Maguire
– Tom Leighton

Tickets will be available from October from King’s College Hospital as well as local shops and businesses.The auction will be on the 12th of December- watch this space for details of the venue!

Here is the King’s Together We Can Charity website:
http://www.togetherwecan.org.uk//kings-college-hospital/news/kings-100-artworks-auction/

If you’re an artist who would like to donate your work or you’re just interested in getting involved, please contact Joanna or Geke at
kch-tr.100artworks@nhs.net
  and tell them you represent the MDS group of patients.
Do tell us at MDS UK if you are donating some art work as well please – we’ll feature your piece of art on our website.

An official poster is being finalised right now – check the website again soon.

Thank you!


Free donations by shopping