What people say about MDS UK

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"You are all such wonderful people for doing what you do and thanks again for talking to me." Kindest Regards, Paul

"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."

"The MDS Patient Support Group was a lifeline for us when my husband Neil was diagnosed just before the first lockdown. We used the website forum to find answers to specific questions, and joined the online zoom meetings for a sense of normality, and to hear what the experts had to say. To have world-renowned MDS experts in our own kitchen, with the chance to ask questions, was incredible!"

"I would like to say MDS Patient Support Group has been AWESOME and I am low level MDS."

"Very helpful talking to other patients in a relaxed, non clinical atmosphere"

"I stumbled across the MDS Patient Support Group while searching for answers following my MDS diagnosis. While the doctors were great and very supportive, I didn't feel I was getting the full story. The "c" word was never mentioned and I was frankly shocked that MDS is classified as a blood cancer when I found out through the MDS Patient Support website. There is so much information there, it answered so many of my questions that I hadn't been quick enough to ask the doctor at the time of my appointment. I read through a lot of the user stories on the Forum and it was so helpful and comforting to read through other people's experiences without actually needing to engage in a time of high stress."

"This is the only time I have contacted the support group but found the information on the website was very helpful"

"Very supportive to help put my mind at ease."

“I have been feeling a bit ‘out at sea’ since my early August diagnosis of MDS. I have had my head in the sand in terms of understanding the illness and I have found discussing matters surrounding my diagnosis very frightening indeed. Thank you for being so generous with your time. I feel not only that I understand the illness a bit better, but that I am better equipped going into my next appointment with my consultant on the 15th”

‘The MDS Patient Support Group has given me a much better perspective on my condition and the various ways for self-help”

“I’m really glad I have connected with the MDS Support Group and am so thankful for all you do.”

"When a loved one was diagnosed with the rare disease MDS, a condition about which my family and I (and countless others) had previously not heard, it was difficult to know where to turn for information. In addition to the first-class care and support provided by the haematology unit at the University Hospital of Wales, we have found the information provided by MDS UK, through its patient handbook, newsletter and website, to be invaluable. The charity’s work, both in promoting knowledge of MDS and in supporting patients and their families, is truly inspirational. I’d like to think that the funds I raise as a result of running the Cabbage Patch 10 will represent a small but helpful contribution to its ongoing efforts."

"We have found the information provided by MDS UK, through its patient handbook, newsletter and website, to be invaluable"

"I discussed my aunt's health situation with Sophie Wintrich. She was very giving of her time and experience/expertise and I really appreciated talking with her."

"I have been to only 2 patient meetings so far and found them both very helpful. I also attended the day forum in London a couple of years ago. Meeting other MDS patients and sharing experiences with them has made a great difference to the way in which I deal with my own MDS and put my own current medical position in perspective."

"The MDS Patient Support Group has given me a much better perspective on my condition and the various ways for self-help."

"Grateful you exist and that you run the Bournemouth group."

"Thank you so so much for your kind words and understanding on the phone today. It has been such a tough few weeks and to know that there is a support network out there to help my mum through this MDS diagnosis gives me great strength. We are trying to come to terms with the options available and we are beginning to accept that it is a long road ahead but we just want my Mum to have someone outside of us for support if required. She will call you as well - she was so relieved to hear how supportive and kind you were. It meant the world to me. I worked as a bereavement midwife specialist but no amount of training or experience prepares you for something like this. The information on MDS is frightening and right now it feels like we are completely consumed by it. I just want to get to a point where mum is living her life as normally and happily as possible with MDS as part of it. Thank you so much again. Your care and compassion was so greatly appreciated. I got out there and delivered all those babies today on labour ward with the knowledge that this might be something we can help my mum through whatever the outcome."

We would love to hear from you!

It would mean a lot to us if you could take just a few minutes to complete our MDS UK Satisfaction Survey - let us know your thoughts, and feedback on your experience with the support group. Is something missing? How do you feel about the service? (Results are anonymous)

Join MDS UK Patient Support Group!

It's free and open to all and offers invaluable information and support. To join, call us on 020 7733 7558 - or email us at info@mdspatientsupport.org.uk giving your full address. We will post you an information pack and add you to our list of active members.

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