hereditary spherocytosis

[rattie16]

Hello all
I'm am new to the group but was wondering if there is anyone on here with hereditary spherocytosis my son is 9months old and constantly in and out of hospital and has already had to have two blood transfusions which is causing a lot of strain on my job is there any help ortips anyone might have
thank you
x x

Hi!

My DS became very poorly at 3 months and we had to have a few emergency transfusions..

It was a bunny road to get a diagnosis.. red blood cell membrane disorder.. most similar to spherocytosis...

So I'm only marginally ahead of you as DS is 2 (and 3 months now).
I too had a awful first 18 months.. I felt like I was permanently in hospitals / GP / A&E..

Keep strong and your head up.. for me there was a turning point after the 20 month mark.. DS seemed to be a bit more stable .. - this is not to say we still don't get scares.

But chin up and stay strong!

Does anyone know when they test the baby for hereditary spherocytosis? I'm currently pregnant and my husband has it.