Hi There From Birth I had Blood transfusions regularly on a 3 monthly basis until Prednisone the DBA wonder drug started to work to help produce blood ..Also had the typical deformities associated. I was on that regime until late teens then I managed to function at around 110 Hemoglobin and full remission Then back on the Prednisone at 47 after a serious blood infection which now all the problems like Osteoarthritis in my spine and hips from the Prednisone . Also liver damage ,enlarged spleen and Iron overloading which now I have chelation therapy I am almost 50 and this is the age they always told me issues will pop up but still living a good reasonable life. I hope this helps and all my best for you and your baby ...DBA is a difficult condition to live with but not one that is unmanageable... Hardest thing as a parent will be the constant hospital visits and seeing your baby dealing with the garage of needles but it will make them stronger in life . Any questions I'm more than happy to help
Please notate that there are many more ribosomal protein involvement than just rsp19. Please update video. Thanks!
Incredible!❤️❤️
Solid
thank u so much
check your written notes... is it rsp19 as above or rps as written below? please advise. tx
RPS 19 GENE
I have had this since Birth ..Now 47 and just devopling other issues from it...
My baby just detected with DBA ...what treatment given to you throughout your journey
Hi There
From Birth I had Blood transfusions regularly on a 3 monthly basis until Prednisone the DBA wonder drug started to work to help produce blood ..Also had the typical deformities associated.
I was on that regime until late teens then I managed to function at around 110 Hemoglobin and full remission
Then back on the Prednisone at 47 after a serious blood infection which now all the problems like Osteoarthritis in my spine and hips from the Prednisone . Also liver damage ,enlarged spleen and Iron overloading which now I have chelation therapy
I am almost 50 and this is the age they always told me issues will pop up but still living a good reasonable life.
I hope this helps and all my best for you and your baby ...DBA is a difficult condition to live with but not one that is unmanageable... Hardest thing as a parent will be the constant hospital visits and seeing your baby dealing with the garage of needles but it will make them stronger in life .
Any questions I'm more than happy to help
I had it since birth
Can you tell me more about it? My daughter is diagnosed with this. I am so worried. How can I contact you?
Plz can u tell me about this as one of relative is suffering from this
@@iqrabutt1236 hi. Did you get any information about this .? How is your daughter now and how old is she. My son is diagnosed with this as well
Hi, can you please explain it. How old are you and how is life with this
Bone marrow transmission is only treatment for this
Здравствуйте, мне нужен перевод на русский
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