MDS Latest News
In their most recent update from the 7th May 2020, NHS England have added MDS (Myelodysplastic Syndromes) specifically, to the government list of highly vulnerable people who should be shielding, isolating – and be receiving an official Vulnerable Letter. We have received many calls from MDS patients and members, reporting that they had not received a […]
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Please find below the recording and the transcript from the The International Academy for Clinical Haematology (IACH) webinar, which took place on April, 2020 with Prof. Mohamad Mohty and Dr. Yolande Arnaul. The webinar focused on the psychological aspects of the pandemic. Dr Arnault is a clinical psychologist and practitioner. She is part of the […]
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Due to the Corona pandemic there is now a severe shortage of blood products as blood donor drives across the world are being cancelled. About 70% of all patients suffering from Myelodysplastic Syndrome are anaemic and become blood transfusion dependent during the course of their disease. Since their anaemia is “refractory”, they are in need […]
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TO ALL MDS PATIENTS AND THEIR FAMILIES The government has lifted some shielding measures. Read here the government updated advice. There is still limited data on the impact of these measures. We therefore emphasize, as the guidance says, that people remain vulnerable and should continue to take precautions. See the first paragraph of the government […]
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Read all about: Patient’s Stories – Living with MDS: Andy Veitch, Kevin Dwyer, Graham Cheyne, Stephen Rhodes Patients’ Poems – by Chris Davis, Kes Grant, Kate D and Shareen Vouvray. Editor’s Note: The poem “Heavy Luggage” was written by Shareen Vouvray. We do apologise for wrongly attributing it to Chris Davis on our Newsletter. Research […]
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Message from MDS UK team – to help each other get through the next few weeks. Please stay home unless told otherwise by your clinical team. A letter should have been sent to you with instructions for your ongoing care. If you haven’t been contacted, you can register on gov.uk If you feel unwell – call […]
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The questions below are transcribed from the AAMDSIF webinar which took place on March 13, 2020 with Dr. Mikkael Sekeres and Dr. Isabel Schuermeyer from the Cleveland Clinic, edited for clarity and brevity. Thanks to our colleagues from AAMDSIF for sharing this with us. With respect to the guidelines for your specific case, the NHS […]
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Dear all, In view of the many questions faced by all regarding coronavirus, our colleagues in the USA organised a free webinar last Friday, March 13, 2020 about the emergency of COVID-19 and the impact on bone marrow failure disease patients. To watch the recording, please follow this link: Webinar Recording The AA/MDS Foundation will […]
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Support, Information, Awareness & Campaigns for those affected by Myelodysplastic Syndromes Come and join this brand new group in the Yorkshire region! Patient Brian Poulter and his wife Jenny have just started this group in Yorkshire. All local patients are welcome to attend, as are relatives and friends. This is an opportunity to get to […]
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Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? Chaired by MDS experts Pierre Fenaux, Uwe Platzbecker, Mikkael Sekeres this prestigious MDS conference will be held in the Mandelieu Congress Centre in Mandelieu-La Napoule, France. Until recently, information on the biology of MDS and the options available […]
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