Hi rosie,
i have read that you have just been diagnosed with MDS, really sorry to hear this.
i got diagnosed in november 2010, i was feeling tied all the time and i went to the gp, they did blood test and i was told to go to my local hospital, i was in shock what was up with me, when i arrived at the hospital they told me that my blood counts was low and i needed a blood transfusion and that they needed to do a bone marrow biopsy, i was very scared what was happening!.
The results took over a week to come back and they confirmed it was MDS, i was so upset, i mean im a 27 year old mum with 2 young kids (girl 3, boy 1).
I have RABE 2, i have now started a cemotheropy drug called Vidaza, but still needing blood monthly, i am coping well but i do find it very hard! I have another bone marrow biopsy on 25 march to see if the vidaza is working. I am also gonna have a Bone Marrow Transplant, i have 2 sisters but there wasnt a match, so they are looking for a match for me, i will go to my bone marrow transplant consultant again on 13 april, hopefully they will have a match for me!
All i can say rosie is keep strong and think positive.
If you have any questions please let me know.
And i agree with you that there is not alot of young people with MDS, i have been searching lots too.
Take Care
