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Blood Cancer Awareness Month – Breathlessness #ThinkMDS

 

September is Blood Cancer Awareness Month and this year, the MDS Alliance is running a 4-week campaign #ThinkMDS.

#ThinkMDS aims to raise awareness of blood cancer, and specifically MDS, a rare group of blood cancers. The focus is for people (particularly Health Care professionals and care-givers) to spot the symptoms of MDS and to take next actions quickly. Fast action enables better treatment and faster diagnosis.

Blood Cancer Awareness Month 2022 - Breathlessness #ThinkMDS

Blood Cancer Awareness Month 2022 - #ThinkMDS

Feeling breathless after little exertion is one of the signs of MDS.

A complete blood count can determine if further action is required. So if patients report feeling breathless after a small amount of exertion, #ThinkMDS and #OrderaBloodCount

If you spot the symptoms #ThinkMDS #OrderaBloodCount

 

  • A Complete Blood Count (CBC) via your GP can easily determine if further investigation into MDS is needed. #OrderaBloodCount
Complete Blood Count test

#OrderaBloodCount

A Complete Blood Count (CBC) is a very common blood test that is often part of a routine checkup. The test counts the cells that make up your blood: red blood cells, white blood cells, and platelets and the results can determine if further investigation into MDS is required. #OrderaBloodCount

 

About Myelodysplasic syndromes (MDS), a group of rare blood cancers

Myelodysplasic syndromes (MDS) are a group of rare blood cancers where patients don't have enough healthy blood cells.  Symptoms vary from person to person and depend on which blood cells are low.  About 8 in 10 patients have anaemia, whilst about 2 in 10 present to their doctor with infections or bleeding.

  • Anaemia is due to a lack of red cells (also referred to as a low haemoglobin), which may lead to fatigue and shortness of breath even on light exertion.
  • Recurrent and persistent infections are another common symptom of MDS, due to low white cell counts.
  • When your platelet count is low, you can suffer from easy bruising and bleeding. This can sometimes manifest itself as a rash on the skin. These are tiny bleedings under the skin called petechiae and often appear where clothes are tight fitted, like around the ankles or waist. Nose or gum bleeds can also be a sign of a low platelet count.
  • Some MDS patients have no signs or symptoms, and are diagnosed by chance as a result of a routine blood test.

As a support group, we have seen hundreds of cases where diagnosis of MDS was delayed. Delays means impaired quality of life for most patients, frequent infections, and for some, a worse prognosis.

If you notice these signs - #ThinkMDS #OrderaBloodCount

  • September 2022: Week 1 - Bruising
  • September 2022: Week 2 - Fatigue
  • September 2022: Week 3 - Breathlessness
  • September 2022: Week 4 - Weakness

Bruising

Fatigue

Blood Cancer Awareness Month: 2022 Breathlessness  #ThinkMDS

Breathlessness

Weakness


Blood Cancer Awareness Month – Bruising #ThinkMDS

 

September is Blood Cancer Awareness Month and this year, the MDS Alliance is running a 4-week campaign #ThinkMDS.

#ThinkMDS aims to raise awareness of blood cancer, and specifically MDS, a rare group of blood cancers. The focus is for people (and Health Care professionals and care-givers) to spot the symptoms of MDS and to take next actions quickly. Fast action enables better treatment and faster diagnosis.

Blood Cancer Awareness Month 2022 - Bruising #ThinkMDS

Blood Cancer Awareness Month 2022 - #ThinkMDS

Bruising easily is one of the signs of MDS

Bruising easily is one of the signs of MDS, myelodysplastic syndromes, a group of rare blood cancers. A complete blood count can determine if further action is required. So if patients report bruising easily, #ThinkMDS and #OrderaBloodCount

If you spot the symptoms #ThinkMDS #OrderaBloodCount

 

  • A Complete Blood Count (CBC) via your GP can easily determine if further investigation into MDS is needed. #OrderaBloodCount
Complete Blood Count test

#OrderaBloodCount

A Complete Blood Count (CBC) is a very common blood test that is often part of a routine checkup. The test counts the cells that make up your blood: red blood cells, white blood cells, and platelets and the results can determine if further investigation into MDS is required. #OrderaBloodCount

 

About Myelodysplasic syndromes (MDS), a group of rare blood cancers

Myelodysplasic syndromes (MDS) are a group of rare blood cancers where patients don't have enough healthy blood cells.  Symptoms vary from person to person and depend on which blood cells are low.  About 8 in 10 patients have anaemia, whilst about 2 in 10 present to their doctor with infections or bleeding.

  • Anaemia is due to a lack of red cells (also referred to as a low haemoglobin), which may lead to fatigue and shortness of breath even on light exertion.
  • Recurrent and persistent infections are another common symptom of MDS, due to low white cell counts.
  • When your platelet count is low, you can suffer from easy bruising and bleeding. This can sometimes manifest itself as a rash on the skin. These are tiny bleedings under the skin called petechiae and often appear where clothes are tight fitted, like around the ankles or waist. Nose or gum bleeds can also be a sign of a low platelet count.
  • Some MDS patients have no signs or symptoms, and are diagnosed by chance as a result of a routine blood test.

As a support group, we have seen hundreds of cases where diagnosis of MDS was delayed. Delays means impaired quality of life for most patients, frequent infections, and for some, a worse prognosis.

If you notice these signs - #ThinkMDS #OrderaBloodCount

  • September 2022: Week 1 - Bruising
  • September 2022: Week 2 - Fatigue
  • September 2022: Week 3 - Breathlessness
  • September 2022: Week 4 - Weakness
Blood Cancer Awareness Month: 2022 Bruising #ThinkMDS

Bruising

Fatigue

Breathlessness

Weakness


Blood Cancer Awareness Month – Fatigue #ThinkMDS

 

September is Blood Cancer Awareness Month and this year, the MDS Alliance is running a 4-week campaign #ThinkMDS.

#ThinkMDS aims to raise awareness of blood cancer, and specifically MDS, a rare group of blood cancers. The focus is for people (and Health Care professionals and care-givers) to spot the symptoms of MDS and to take next actions quickly. Fast action enables better treatment and faster diagnosis.

Blood Cancer Awareness Month 2022 - Fatigue #ThinkMDS

Blood Cancer Awareness Month 2022 - #ThinkMDS

Fatigue, caused by anaemia, can result in patients reporting:

 

  • Excessive tiredness
  • Lack of energy
  • Muscle weakness

A complete blood count can determine if further action is required. So if patients report feeling tired all the time and lack in energy, #ThinkMDS and #OrderaBloodCount

If you spot the symptoms #ThinkMDS #OrderaBloodCount

 

  • A Complete Blood Count (CBC) via your GP can easily determine if further investigation into MDS is needed. #OrderaBloodCount
Complete Blood Count test

#OrderaBloodCount

A Complete Blood Count (CBC) is a very common blood test that is often part of a routine checkup. The test counts the cells that make up your blood: red blood cells, white blood cells, and platelets and the results can determine if further investigation into MDS is required. #OrderaBloodCount

 

About Myelodysplasic syndromes (MDS), a group of rare blood cancers

Myelodysplasic syndromes (MDS) are a group of rare blood cancers where patients don't have enough healthy blood cells.  Symptoms vary from person to person and depend on which blood cells are low.  About 8 in 10 patients have anaemia, whilst about 2 in 10 present to their doctor with infections or bleeding.

  • Anaemia is due to a lack of red cells (also referred to as a low haemoglobin), which may lead to fatigue and shortness of breath even on light exertion.
  • Recurrent and persistent infections are another common symptom of MDS, due to low white cell counts.
  • When your platelet count is low, you can suffer from easy bruising and bleeding. This can sometimes manifest itself as a rash on the skin. These are tiny bleedings under the skin called petechiae and often appear where clothes are tight fitted, like around the ankles or waist. Nose or gum bleeds can also be a sign of a low platelet count.
  • Some MDS patients have no signs or symptoms, and are diagnosed by chance as a result of a routine blood test.

As a support group, we have seen hundreds of cases where diagnosis of MDS was delayed. Delays means impaired quality of life for most patients, frequent infections, and for some, a worse prognosis.

If you notice these signs - #ThinkMDS #OrderaBloodCount

  • September 2022: Week 1 - Bruising
  • September 2022: Week 2 - Fatigue
  • September 2022: Week 3 - Breathlessness
  • September 2022: Week 4 - Weakness

Bruising

Blood Cancer Awareness Month: 2022 Fatigue #ThinkMDS

Fatigue

Breathlessness

Weakness


Stem Cell Transplantation: A recorded Zoom session with MDS UK patients and specialists from King’s College Hospital.

 

On August 25th 2022, Dr Victoria Potter, Consultant Haematologist &  Michelle Kenyon, Clinical Nurse Specialist, from King’s College Hospital, led a session on stem cell transplantation to a large group of MDS UK patients.

Below is a recording of this fantastically valuable session chaired by Chris Dugmore, Essex Group Coordinator,  Volunteer & Volunteer Coordinator with MDS UK. 

The session starts with an overview of the issues involved in stem cell transplantation followed by a Q&A between specialists and patients. The recording is approximately 1hr 50m and has invaluable information and support for those considering a transplant.

What patients said about the meeting

"I just wanted to say how good the 'Stem Cell Transplant' zoom meeting was today. Excellent facilitation by Chris Dugmore and the medical staff from Kings were really good, explaining things very easily and clearly. This was a much needed topic and personally I think it should be a topic that is covered on a regular basis as there is definitely an audience for it."

 "Re the 'Stem Cell Transplant' meeting, I just wanted to thank you for organising such a brilliant meeting and for chairing it so efficiently."

"Getting in touch with the MDS Patient Support Group is proving to be one of the most reassuring (and helpful) things we have done so far since my Dad was diagnosed."

Specialist speakers from King's College Hospital

MDS Patient Support

Dr Victoria Potter is the Consultant Haematologist and Transplant Programme Director at King’s College Hospital. She has been at King’s College Hospital since 2010 and estimates she has over-seen over 1000 stem cell transplants in that time. King’s is one of the 3 largest transplant centres in the UK.  

MDS Patient Support

Michelle Kenyon has been a Clinical Nurse Specialist at King's College Hospital for almost 25 years.  She also runs a 'Long Term Effects' clinic for people who’ve had a stem cell transplant.  Michelle is the co-author of two books on stem cell transplants. 

Stem Cell Transplantation: Patient Information books

Michelle Kenyon co-authored two patient information books on stem cell transplantation.  The first book, 'Seven Steps',  is the most widely used stem cell transplant patient information booklet in the UK.

The second book, 'The Seven Steps: The Next Steps'. was produced in direct response to feedback Michelle received from her patients at King’s, who would often tell her that they needed more information about what to expect after a transplant.

To access a .pdf of  'The Seven Steps: The Next Steps' click the link below. https://www.anthonynolan.org/sites/default/files/2021-08/1981PA_Next7Steps2021_DIGITAL.pdf


Clinical News from the American Society of Haematology (‘ASH’)

The American Society of Haematology (ASH) have published some very interesting articles about various aspects of MDS and the potential effectiveness of a number of treatments (see the links below).

 

Cell Architecture Drives MDS and Progression

The hematopoietic cell architecture in myelodysplastic syndromes (MDS) may have the potential to predict disease progression and guide use of second-line treatment...Read more

 

ASXL1 Mutations May Predict Response After Venetoclax and HMA Therapy for MDS

The presence of ASXL1 mutations predicted a favourable response and survival after venetoclax and hypomethylating agent (HMA) therapy in patients with MDS with excess blasts (EB)...Read More

 

Magrolimab Plus Azacitidine Elicits Response in Untreated, Higher Risk MDS

Patients with higher risk myelodysplastic syndromes (MDS) were treated with magrolimab plus azacitidine in a phase Ib study. Investigators noted a lower-than-expected rate of discontinuation due to adverse events (AEs)...Read more


Advice regarding hosepipe bans and water shortages

 

If you are listed as a vulnerable or disabled person, due to MDS or any other condition, and your local water authority has imposed a hosepipe ban, please contact their customer service department and ask to be added to their priority service register.  

Certain exceptions apply to the hosepipe ban in the case of older/vulnerable persons, for example, you may still be permitted to use a hosepipe to water plants if you would have difficulty managing a watering can.  One of our supporters registered yesterday, with South East Water, and received a supply of bottled water today too!


Evusheld is approved in UK for prophylaxis in immunocompromised people

 

The drug Evusheld has been approved by the MHRA (Medicines and Healthcare products Regulatory Agency), but the government has not yet made a decision whether to make it available to patients.

We are continuing to monitor the access issues and joining the request of all blood cancer charities to make this drug available to immunocompromised patients, in particular blood cancer patients who have not responded sufficiently to the Covid-19 vaccines to date.

You can help by writing to your MP, asking them to add pressure to the government, to make the drug accessible. 

For tips on writing to your MP, and how to find their contact details see the

The Results website

Click this link to visit the Results website    https://www.results.org.uk/guides/how-write-your-mp

Do quote both Evusheld articles below and explain that MDS patients need this additional treatment option, to have a semblance of normal life. 

'Evusheld is Approved in UK' by Jacqui Wise - Click this link to read the BMJ (British Medical Journal) article on Evusheld  https://www.bmj.com/content/376/bmj.o722

'Clinicians call for Anti-Covid Treatment to be Available in the UK' - Click this link to read the Medscape UK article by Siobhan Harris.  https://www.medscape.co.uk/viewarticle/

The APPGs (All-Party Parliamentary Groups) on Blood Cancer and Henry Smith MP, are also seeking answers on behalf of all blood cancer patients. 

Click the link below to read about Henry Smith's role as the chair of the All-Party Parliamentary Group on Blood Cancer https://www.henrysmith.info/bloodcancer

 


Volunteers needed!

MDS UK - Volunteers needed!
Help us to improve the lives of everyone affected by MDS by volunteering your time and experience. Volunteers play a vital role in MDS UK; the expertise and time given from all our volunteers is hugely valued and makes a big difference to our charity. We simply could not do what we do without you.  We currently have three important volunteer roles available.

 

Treasurer (voluntary post)

After many years with us, our wonderful treasurer, Don Barrett, has decided to dedicate more time to his new grandchildren. We are deeply grateful for the many years Don has supported us, and the care and skill he's brought to managing our finances.  Could you step into Don’s shoes?  You don’t have to be a qualified accountant, just have financial management experience, a head for figures, a working knowledge of Sage Accounting/Payroll systems and a love of spreadsheets!

 

Trustee (voluntary post)

We are currently looking to recruit a number of Trustees to help steer the charity as we develop and expand. Applicants from all backgrounds and experience will be considered, but those with legal, IT, or research experience would be particularly welcome.

 

Newsletter Editor (voluntary post)

Do you have a flair for words?  An eye for detail?  A love of grammar? If so you could be the perfect person to edit and proofread our monthly newsletter, as well as help with copy for our patient information literature, and we’d love to hear from you!

If you're interested do get it touch

If you are interested in any of these roles, please email our Operations Manager, Debbie at dhickman@mdspatientsupport.org.uk for further information.


 Want to Chat with others but not keen on Facebook? 

 

Try our newly upgraded Chat Forum,  it's the perfect answer! Whether you are a lapsed user, or new member - do give it a try! Leave a new message in one of the folders, ask a question, respond to a message that’s already there or just say hi!

Screenshot of MDS UK Chat Forum Subject index page listing some of the subjects discussed

When we started our MDS Community Facebook group, our popular Chat Forum shrank, as everyone migrated to Facebook but many of you are coming off Facebook, or are not keen to use it anyway.

The Chat Forum has been newly upgraded and reorganised to make it easier to navigate.  It offers a direct link to other patients and relatives, it is protected by a coded username and a password, and arranged via themed folders. You can find information too, such as Travel Insurance recommendations and tips, messages from our Local MDS Groups, messages about transfusion needs, stem cell transplants and much more.

Evidence has shown that peer to peer support is important to people coping with cancer.  In the words of Lidia Schapira, MD, FASCO

Peer support through web-based platforms, lets a person vent their frustration, learn about new treatments or research protocols, and exchange information. Knowing that others have had similar experiences and that they can help, may make all the difference in how someone lives through the challenge of cancer....Hearing that you are not alone can inspire you or give you a little more confidence to overcome a difficult symptom or side effect. Peer support may help explain treatment options or provide a deeper understanding of your diagnosis. It may point to new research that may be relevant to your situation.

So give it a try!


Simon Wilkes chosen by Birmingham FA as ambassador with charity partner Anthony Nolan

 

The Birmingham Football Association has just announced their collaboration with our amazing ambassador Simon Wilkes and charity partner Anthony Nolan. Simon will be working with the FA to increase the number of people registered as a Stem Cell donor across the West Midlands and Warwickshire using Grassroots Football as a stimulus for individual recruitment. This is fantastic news for the Wilkes family.

'Words can't explain what all this means to me, I never thought in a million years I would get the story this far...so excited to get this off the ground and potentially save lives' - Simon Wilkes.

 

Simon is an MDS patient himself and he and his wife Lynn and son Ben have supported MDS UK for many years.  Read more about Simon's own patient experience here:  https://mdspatientsupport.org.uk/mds-stories/simon-wilkes-hopefully-so-many-lives-will-be-saved/

Simon and his family are also fervent supporters of Anthony Nolan, organising stem cell donor recruitment drives in their local area, using his network as a football coach.

The Anthony Nolan Charity aims to increase the number of people signed up to the Stem Cell Donor Register. across the UK. There are currently 880,000 individuals nationwide that are signed up.

The Wilkes family had been involved in Grassroots Football for 22 years, before tragedy struck in 2017 when their son Olly passed away. Their last day together as a family was at a charity event, 11 days prior to Olly's passing and they were raising funds for two chosen charities, MDS UK and Anthony Nolan. Since Olly’s passing, many of his friends and family have signed up to the Stem Cell Donor Register.

Matt Beveridge, stem cell donor

After joining the register, one of Olly's friends, Matt Beveridge had the call from Anthony Nolan as he was found to be a match. Matt Beveridge was a local hero, his story was featured in the local press and on local radio. Matt's Anthony Nolan story is on the video below. He was later to find out he had saved the life of a young Spanish woman.

The Wilkes family made a decision to organise memorial events as a legacy to 'Our Olly' in heaven. The first Olly Wilkes Memorial Football Tournament was organised for 19 May 2018 with the Anthony Nolan recruitment team attending. This resulted in a further 52 people signing up to the stem cell register.

Driven by the need to raise awareness of MDS, and stem cell donations, Simon, along with family and friends & their beloved "Withymoor Colts Family" continue to organise events like these.

Due to COVID, the event was postponed several times – but The Olly Wilkes Football Tournament will finally go ahead on 25th June 2022. This event is very special and a further legacy to their son Olly. Funds raised for the tournament will be divided between MDS UK, the Lily Mae Foundation and Withymoor Colts RE-UNION.

Simon and the committee organising this special event are looking for anyone able to support it with gifts for the Grand Raffle, Memorabilia Auction, tombola or any other ways to assist. Any enquiries - please contact Simon via Ashleigh Venables at fundraising@mdspatientsupport.org.uk, or direct to simonwilkes27@blueyonder.co.uk

The Wilkes family thank Ikuto Group Ltd for their sponsor!

MDS Patient Support

For more on the Birmingham FA collaboration see birminghamfa.com 

 

 

Logo - RideLondon-Essex challenge 2022
Simon Wilkes and family

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