Hi , my name is Kian and my current diagnosis is myelodysplasia (MDS- a group of blood cancers) and i also have a u2af1 mutation which has risen to 26% as well as a hypo cellular marrow of 40%

2025 was a long rollercoaster for me and my family as we have been back and forth to hospital, received different diagnosis, been told different things and in 2025 I received 2 bone marrow biopsies

Initially the doctors suspected leukaemia however after the first bone marrow biopsy it became clear that something else was wrong .

At first I was glad that i didn't have leukaemia , however the doctors had a deeper look at my bone marrow and found i had hypo cellular marrow which stood at 40% (around half of what it should be at my age ) and a mutation ,normally found in patients over 60 ,called u2af1 but at this point in time it was only 7% .

Although 7% doesn't seem bad it does mean it will have to be further investigated, which lead to my second bone marrow biopsy in which they had found the mutation had risen to 26% and i was displaying symptoms of myelodysplasia ( another condition mostly seen in elderly patients)

I have looked to try find other cases of this or how common it is but unfortunately there's not enough recorded cases for me to give a number but i do know it is extremely rare and the figures would be 1 in tens of millions as far as im aware

My team at LGI have been great at looking after me and using their knowledge to work around my condition as well as looking at cures and my future

At an appointment near the end of 2025 it was explained to me that chemotherapy and a bone marrow transplant would be a possible option and unfortunately the only option to prevent future bone marrow failure or progression to leukaemia. This idea was brought to a national meeting with leading doctors in the UK who requested a third bone marrow biopsy to see if there is any changes and to be 100% sure about treatment.

Fortunately the third bone marrow and other blood tests revealed my bloods were getting better and the mutation had slightly reduced and the best option for now would be to see what the future holds and keep an eye on me

If it was to go ahead i would be kept in hospital for around two months to complete chemotherapy and the bone marrow transplant (doners already found) and hopefully should be fully recovered after 6 months however this is not certain and fingers crossed I won't have to go through with it

This time has been life changing for me and everyone around me but I have great support from everyone around me and I'm trying everyday to get better.

I don't expect heaps of money and that is not my goal I just want to spread awareness for people who suffer with conditions like mine however anything will help .

Thank you for listening to my story any donations are greatly appreciated .