SS carrier

[Nadineb1]

Morning all glad I found this forum. My daughter is 8 and has hbss. He crisisis are frequent and intense. Often at least 14 days in hospital. She is on all the usual daily medicine such as folic acid, penicillin, hydroxrea and we have morphine and such at home for pain relief. She was on weekly transfusions for a year and it worked well but now she has iron overload so that had to stop. Her consultant is pushing for bone marrow transplant and we have a sibling match but we don't know enough about the procedure to go ahead. I see from reading here that people are on regular exchanges and I'm just wondering what other options there are. She has had exchanges before but In emergency situations. She has frequent chest episodes and would welcome any advice. Thank you

[jo19]

Hi Nadineb, welcome to the forum. I am sorry to hear about your daughter. Her experiences sounds like mine when I was growing up. I had very frequent very painful crises especially in my my chest. It's was difficult because most people with sickle cell that I met didn't have as much pain and even if they did it was in their limbs. They also weren't screaming in pain like me. I thought it was my pain threshold but I was told by my doctor that it wasn't. You should do everything the doctors have asked. At her age, the bone marrow transplant should not be a problem. It's best to do it now. We do exchange transfusions because there's not much else for some of us. I do have Iron overload and it's being treated with chelation therapy. The exchange that I am doing apparently doesn't increase iron. I hope things work out. Also watch out for some foods. I couldn't eat red meat and bread or sleep in the day time strange as it might sound. Be strong and good luck.

[Nadineb1 in reply to jo19]

Hi jo19 thanks so much for your detailed reply. I have arranged a meeting with the transplant team as we certainly can't leave her as she is. Take care x

[Ummbilal]

I feel for your daughter hope all goes well for her future. It's really good to hear that the consultant is talking to you guys about bone marrow transplant look into it more and consider your self lucky as NHS highly avoid this procedure and also bare in mind NHS does not do this transplant once they are adults .

Recently on channel 4 news they spoke about sickle cell and they brought two patients one was an afuyand he said NHS are refusing bone marrow transplant on him as he is an adult so he will be doing it privately nad there was another patient a child who was 6 he had bone marrow transplant and his mother was the donor but she had to push for this procedure. The transplant went successful the procedure was called haploidentical , look into that. Good luck and all the best for your daughter and I hope you make the right decision for your daughters future and hope to hear good news .

[Nadineb1]

God morning ummbilal thank you so much for your response I will look into the channel 4 programs you recommended and keep you posted with progression. Xx