MDS diagnosis at 25 years old

Hi everyone,

I was told yesterday that I have MDS which has a mutation which will cause leukaemia. 

I'm terrified not for myself but for everyone around me and dealing with the fact that I may die.

I will be going to a transplant clinic soon to discuss my treatment going forward. At the moment all I know is is that I'm very high risk and I need a bone marrow transplant as soon as possible. 

They also spoke about doing chemo but because my white bell cell level is so low they will only be doing a light form.

is there anyone that can give me advice on this 

  • Hello Pixie1997

    I'm sorry to hear that you've been told this week that you have MDS. It's understandable you're feeling scared and have questions about what this diagnosis may mean for you. 

    I'm not aware of any members here on the forum who have MDS but hopefully if there is anyone they will post to introduce themselves and share their experiences with you. 

    In the meantime, I wanted to give you the link to the Blood Cancer UK website which has some useful information about MDS along with a specific blood cancer forum where you may be able to connect with others who have had this diagnosis. 

    If you'd like to chat with one of our nurses you're most welcome to call them on 0808 800 4040, Monday to Friday 9 am to 5 pm. I'm sure they will be happy to offer any advice and support they can. 

    best wishes, 
    Jenn
    Cancer Chat moderator