hereditary spherocytosis

[KMStorey]

Anyone else on here have a child with h.s?
My 3 year old son has it, be nice to speak with people going through the same thing

Hi, not sure if your still there!

My husband has HS he found out he had it at 14, at 33 he luckily still has his spleen! his whole family was tested at the same time, and they found his mum and 4 other siblings all have it, they all have episodes of being poorly and my husband has had a blood transfusion.

I was wondering did your son show signs at birth? My son has been tested and found negative but they want to keep an eye on him in case it presents itself later.

I don't have it and we are hoping for another child soon, did you suffer through pregnancy?

My husband has it, as does his mother and two siblings. DH is the only one who has had to have his spleen removed and still gets very tired very easily.

We had DD tested at birth and again at 1 year - we were sent to the haemophilia clinic at the Evelina in London (was our local hospital) for the testing as they kept messing up and doing a FBC rather than just a blood film. She tested negative both times and we don't need to test again - she also had no jaundice after birth which is apparently a good indicator.

We made sure the hospital were warned about the possibility before birth and they had print outs on it in my notes so that if she did have even mild jaundice they would treat as if it was more severe from the start.

MIL said it was v obvious which of her DC had it and which didn't from very soon after birth. The Evelina said they see a number of children with it and the majority have no real symptoms, while a few have needed splenectomy or frequent transfusions.

Hi All,

I know this post is a bit old but wanted to reach out to other parents out there with kids diagnosed with the condition..

My DS has been diagnosed with a red membrane disorder - it was a bumpy ride getting the diagnosis.. and most similar to spherocytosis..
So I want to reach out to other parent a to find out a bit about their experience..

Thanks - from a lonely parent..