Emma's diagnosis came as a shock

Emma was diagnosed with MDS in August this year, which came as a bit of shock. She has been unwell for a few years, and has been sent to the haematology department annually for 4 years.

We went to the results appointment expecting to be sent home with a flea in our ears again. But it was not to be, the Dr informed us that Emma had MDS, but couldn’t give a fuller explanation due to some further tests waiting to be carried out. She told us that MDS was a journey, and that it would ultimately lead to AML, and then death if she didn’t have a Stem Cell transplant. We left the hospital in a daze and Emma broke down.

Whilst we were outside she said the most British thing I have ever heard: she said that what she needed was a cup of tea.

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A holiday overshadowed by the diagnosis and how we found out about MDS UK Patient Support Group

I was due to fly back to Cyprus where I was working the next morning. I worked at the Royal Air Force. They were understanding and let me have some time off.

The family had planned a holiday to Cyprus, which we duly went on, but it was overshadowed by the diagnosis, and we couldn’t tell the children as we were only half aware of what was happening. Whilst being away, we googled the condition a lot and the information we found was complex and scary.

My Brother in Law, Keith got into researching and found MDS UK, and he made contact with Sophie. She explained to him what it was and Keith then relayed to us. It was a worrying time.

Thanks to MDS UK we had Emma's condition explained by a specialist

On coming back to the UK, we were able to get an appointment through MDS UK and York Hospital to see a specialist in Leeds, Prof Bowen, who was able to give us the results of the cytogenetic tests.

Having Emma’s condition explained by a specialist helped a lot. He gave us the correct information, although not great, it still helped. Emma is on a watch and wait, where she will have her bloods taken every 4 weeks. This is always going to be a worry, but I’m glad that we are now under the care of the specialist team.

MDS UK Patient Support Group

If you or someone you know is affected by MDS, give us a call. We can do a lot to support, from putting you in touch with fellow patients to providing you access to MDS Specialists

Please do send us your story – whether you are a patient, family member or friend:
Email it to Info@mdspatientsupport.org.uk, or call to our main office Tel: 020 7733 7558.

You may talk about any aspect of the condition, or how your experience has affected or changed you. Feel free to add photos as well. Thank you in advance!

You are also invited to join our forum, a lively community of MDS patients sharing their own experiences and questions.

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