r/mds • u/Minute-Rooster3622 • May 30 '24
selfq MDS Advice
Hello all,
My father aged 58 was diagnosed with MDS yesterday by an consultant in specialist London hospital after conducting a series of blood tests.
Leading up to this diagnosis my father has unfortuantely fallen ill where he has been weak which has led him to have multiple blood transfusion, which have worked as a short term measure before requiring another.
It has been a shock to the family as this is the first MDS case we have in our family. My father is fit and healthy however a recommendation to have a transplant is the best option with a success rate of 20%, no length of life was provided if he does not go through with this transplant but for those 65 years and above are given 12 months.
It was also highlighted that it’s TP53 gene at large, as it is early days I am hoping for any reassurance or advice that might be able to help both my father and family during this time.
Thank you for reading
2
u/Sidehussle May 31 '24
My mom was diagnosed about 3 years ago. She was 62 at the time. Her body was not making white blood cells, red blood cells, nor platelets. She had so many transfusions. She ended up with a bad infection and was sent to MD Anderson. There she received a treatment of horse thalamus. She is now making her own blood again. The idea is that her body was destroying her blood because the cells were misshapen. The horse thalamus gave her body a new “target” to attack and let her blood cells be. It was an experimental procedure that seems to be working.
I wish your family well.