Red Cell Exchanges
The Ro subtype explained
The Ro subtype is simply blood with a certain combination of genes.
What makes donors with the Ro subtype special, is the fact that only 2% of our donors have it.
Understanding blood types
To explain what the Ro subtype is, we need to start by explaining a little bit more about blood.
There are 36 known blood group systems that make up your blood. For blood transfusion the best known and most important blood group systems are the ABO group and the Rh group.
The ABO group determines whether you belong to blood group A, B, O or AB.
Specifically, the RHD gene of the Rh group determines whether someone has + or - blood. If the RHD gene is present, it is positive (+) and if the RHD gene is absent, it is negative (-).
So together, the ABO group and the Rh group create these eight, commonly known blood groups:
A+ A- B+ B- AB+ AB- O+ O-
https://www.blood.co.uk/why-give-blood/demand-for-different-blood-types/the-ro-subtype-explained/#
Calvin's Story
Calvin Campbell is a member of the choir who also has Sickle Cell and requires regular exchanges "Blood"
In his own words explains the impact of having Sickle Cell and needing Blood has on his life.
https://www.blood.co.uk/news-and-campaigns/the-donor/ive-spent-most-of-my-life-in-hospital/
Blood Donors Save My Life
Mum of one of the youngest sickle cell patients to rely on donated blood makes emotional appeal for more black donors
Children like 17-month-old Suki urgently need better matched blood to give them the best possible start in life.
The mum of a toddler who needs regular blood transfusions to stay alive is urging more black people to donate to help patients like her daughter who need ethnically matched blood.
Layla Lawson’s 17-month old daughter Suki has sickle cell disorder, an inherited blood disorder that is more common in black people. It can cause organ failure, stroke or loss of vision, and can be fatal.
https://www.sicklecellsociety.org/blood-donors-save-my-life/
I’ve spent most of my life in hospital
Calvin Campbell’s whole life has been affected by sickle cell disorder. It’s a serious blood condition but thanks to regular blood transfusions, Calvin says he can still enjoy work and family life.
"I experienced my first sickle cell crisis at six months old and from that point onwards, I’ve spent most of my life in hospital rather than outside of it. As a child, I was constantly in pain, so it didn't seem strange to me to be in hospital more than at home.
"One of the most difficult things about childhood was missing so much school and having to make up stories to my friends as to why I wasn't at school or just wasn't around much as a child.
Click Link: I've spent most of my life in hospital
Hydroxycarbamide
Hydroxyurea treatment is a drug that's transforming the lives of people with sickle cell and along with red cell exchanges "Blood" is improving the lives of thousands.
Hydroxyurea treatment is transforming the lives of children with sickle cell disease in the Liverpool area.
This is a guest article from Dr Russell Keenan, Consultant Paediatric Haematologist and Lead for Clinical and Laboratory services for Haemoglobinopathies for Liverpool, Merseyside, Cheshire and North Wales.
Hydroxyurea also known as hydroxycarbamide is a medicine that has been around for nearly 150 years. In the early 20th century it was used to treat some rare leukaemias and skin conditions such as psoriasis but it is not often used for these conditions today. Hydroxyurea has been used with increasing evidence in sickle cell disease for almost 25 years now. It is not a new drug that has just been invented. This long history is important as we already know a lot about this medicine from decades of use.
I will review in this article the medical and scientific literature especially looking at recent evidence in children and the long term benefits of taking hydroxyurea for sickle cell disease.
How it works?
Parents may remember that when their child was born they had no sickle cell problems in the first 6 months and very few in the first year. This is because in babies blood there is a special haemoglobin called haemoglobin F (HbF) which protects the sickle haemoglobin (HbS). This is nature’s natural protection against sickle problems. This is very effective as HbF actually carries oxygen around the body releasing it to any sickle blood under stress so preventing the fundamental process that causes almost all of the problems in sickle cell disease.
Hydroxyurea mainly works by reducing the amount HbS made and increasing the amount of this baby blood HbF back towards the levels seen in young babies.
HbF is easy to measure and the doctors and nurses regularly check the levels of haemoglobin F to monitor the beneficial effects.
Have we underestimated Sickle Cell Disease?
In the past there hasn’t really been any effective treatment for sickle cell disease. Therefore, I think doctors and nurses, including myself, have not always talked enough about the seriousness of sickle cell, the long term complications, or the risk of dying from its complications. It almost seemed cruel to just go on about future problems when there was, in truth, very little we could do about it.
Now with Hydroxyurea this is all very different. We now have an effective treatment to prevent sickle problems. While hydroxyurea is not a cure, when taken regularly, it certainly is having a massive impact on the quality of life of patients and families in Liverpool.
Crizanlizumab – A Simple Guide
This page contains a simple overview of a new sickle cell treatment, crizanlizumab (brand name Adakveo®), and the Managed Access Agreement. We will continue to update and change this page as more information becomes available.
Crizanlizumab:
Managed Access Agreement
What is Crizanlizumab?
Crizanlizumab is a treatment injected into the vein (intravenous, or IV) that people with sickle cell can take on its own or alongside hydroxycarbamide (also known as hydroxyurea), to prevent episodes of pain and some other complications in people with sickle cell.
Crizanlizumab is the first new treatment (the first in over 20 years) for people living with sickle cell, available on the NHS through a Managed Access Agreement (more on this below).
The National Institute for Health and Care Excellence (NICE) has recommended crizanlizumab for patients who have been diagnosed with sickle cell disease subject to the terms of the Managed Access Agreement (MAA) which is available to read here: https://www.nice.org.uk/guidance/gid-ta10470/documents/committee-papers-3.