Kate, diagnosed with MDS RA-RS in July 2020

I am fit and healthy! Well… so I thought!

I’m Kate, 48yrs from Yorkshire, recently diagnosed MDS RA-RS in July 2020 – found out by complete accident as I had no symptoms.

January 2020 – went to the Dr as my chiropractor asked me to get a blood test to check for inflammatory markers – I had an ongoing severe muscle spasm in my shoulder. I think she was thinking rheumatoid arthritis or some other issue – I have arthritis (shoulders/hips) but that’s mainly wear and tear and have other joint issues as I was a jump-jockey in my younger years – fell off a lot at speed! Self inflicted torture? depends how you look at it ? .

Anyway – the bloods came back anaemic but with higher iron than is normal – so by March 2020 I was having another blood test – I wasn’t worried – didn’t have any symptoms and was just a bit tired sometimes. I am currently a Pilates Instructor/Personal Trainer so I am fit and healthy! Well… so I thought!

Then we went into lockdown – I did push my Dr to redo bloods – she said I had large red blood cells but thats all I was told. So I then asked for a hospital appointment as I wanted to know why …. eventually was referred to Harrogate Haematology on April 2020 – this was cancelled until July because of Covid. By July I was slightly worried but I felt ok. Still no symptoms just a bit tired.

Diagnosis day 16th July and I was utterly floored!

After a phone consultation, they got me straight in for a bone marrow biopsy the next day! and more bloods and then I had a 3 week wait which was terrible. I was now very worried and thought I had some sort of multiple sclerosis (not sure why – must have been googling) Do not do Dr Google!

Diagnosis day 16th July and I was utterly floored! I really didn’t have any symptoms but once I was told I was anaemic I sort of became it! The Macmillan at Harrogate were so lovely and really helped me the first few weeks – I was all over the place ? .

So I have MDS/RA-RS large red blood cells – too large and iron over normal levels but still anaemic – no treatment just a watch and wait.

In August I went to visit the awesome Professor Bowen. I felt so much better having seen him

By August I had got my head around it all and went to visit the awesome Professor Bowen at Leeds Centre of Excellence. I was terrified! He could see I was terrified and put me at ease straight away. I got my bloods checked again and this time I wasn’t anaemic – madness…. we had a long chat and I felt so much better having seen him face-to-face. I am currently still watch and wait.

December 2020 and March 2021 bloods remain stable, still slight anaemia. I am now doing more exercise than ever! I am determined to keep as fit and healthy as I can and can honestly say I have never been scared of anything until last July! 

I haven’t let Covid stop me working and I am now teaching online (ZOOM) pilates to a few small groups – I am happiest when I am helping others. 

I am a lower back pain focused teacher and have several clients who have survived breast cancer and some who have managed to reverse their osteoporosis.

I have not shared my condition with my clients just yet as I feel they will treat me differently and it hasn’t affected my work. I do have tired days and sometimes breathless but I am not sure I would have noticed if someone hadn’t told me ! 

I often do charity events and have recently been running every day for the January RED that I do annually – I did manage to raise £350 for MDS charity for my last birthday and will continue to help when I can. I have really valued the Facebook group and zoom cafe sessions – I no longer feel alone with this mad disease, so thanks for the comments online.

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