Hi everyone.  I hope you don’t mind an older person like me being here… I’m 35 years old, but single and young!  I have MDS and looking to bonemarrow transplant in the near future.  Many other people I’ve spoken to are much older and transplant isnt an option for them.  Just wanted to also thank the writers for including MDS here.  There are very few of us!

Any other MDS young people here who’d like to chat?  I’m not having treatment right now.  Only need transfusions if I have nasty infections, or bleeding.  Platelets are one of my main worries.  Around 20 mostly.  Take care all.  Love to hear from someone.  Jules xo

September 12, 2011 by  
Filed under Community

  • Leah Shearer

    Hi Jules,

    Welcome to the site. You might find it surprising, but a lot of survivors come on here or past their teen years but were diagnosed as a teen. It’s my feeling that in many ways things you experience as a teen stay with you.

    I think you likely have a lot of valuable insights to share…and it’s very likely folks on here have might have experienced similar issues.

    When were you diagnosed, Jules?

    Leah Shearer
    TLC Program Coordinator

  • Julie

    Thanks Leah. You know, I only just discovered Melissa’s Story and it is a real inspiring one. Wish I had her courage and determination.

    I was diagnosed with Aplastic Anemia when I was 20. Transplant was discussed back then but a match wasn’t found. I struggled for a few years with transfusions and treatment, then became quite well. Transfusion free for 14 years! But now diagnosed secondary MDS and my life has become uncertain again. I struggle a lot with depression too, which makes me look at Melissa’s story and long for the passion she had for life. I need something to fight for. And being single and childless, I feel like I’ve lost my opportunity to have a family. But I guess that isn’t everything. I’m an Auntie to 3 lovely little girls. My sister is my hero. Always wanted to be like her.

    Anyway, that’s some of my story. I’m taking a copy of Melissa’s Story to my Psychologist this afternoon. I’m determined to get on with my life the best I can, but just need a little help. No shame in asking for it.

    Thanks again for replying to my post. Are you a patient yourself Leah? xo

  • Julie-Ann Mansfield

    Ok, now I’m sighned in properly! Lol.

  • Henriette

    Hi Julie Ann!

    I’m 22 years old and was diagnosed with MDS about 6 years ago.
    I’m not having any treatment now, and don’t use any heavy medication either. I have been ill before, but all in all I have been very lucky so far! I also have a donor in case it gets critical.

    Its very hard to find good information about development of MDS in young people.
    And I haven’t really talked to anyone else with the illness since there isn’t that many of us!

    What kind of MDS do you have, I have RARS…

    Are you still waiting for the bone narrow transplant or has something happened?

    Love to hear how you are :)

    Henriette, Norway:)

  • Carly

    HI both,

    I see this thread is quite old, was just wondering how you both are getting on? I’m 19 and got diagnosed in August and due to start the BMT process in March, so so scared!
    I’ve found it very hard finding other people that aren’t old with this condition!
    Carly, UK

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