[jenni-fleur]

I'm new to the forum, hoping to meet some more people in a similar situation and perhaps some advice where to go from here.

My journey into bone marrow failure began when I was 9 years old and developed severe aplastic anaemia after being treated with chloramphenicol. I had ATG and cyclosporin and entered remission the next year.

There I remained until last year, when at 22 years I was diagnosed with myelodysplastic syndrome, most likely secondary to the AA/treatment. I am consistently told this is very rare in young adults and feel this has had implications on my treatment as there is no obvious, well-trod way forward. I was trialled on lenalidomide, and the search began for a bone marrow donor.

March this year I was told it had progressed to AML. I have no matched donor. I have been on AML induction chemotherapy, but unable to achieve a complete remission. I also now have CNS disease. Been told there are no more options than supportive therapy and this has shattered me. Ironically I feel more well than I have for a while. I'm not prepared to die so young.

I was wondering if anyone else had experience of MDS/AML refractory to treatment? Also looking for doctors/hospitals/departments worldwide if necessary who might be able to give me some more hope? Or perhaps I need to accept this and am wishing for something I can't have. I don't have a close family so sometimes feel I am fighting this alone and would love to hear anyone in a similar position (be that AA, MDS, AML).

Thank you.