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TweetDeck" title="Wed Jun 03 14:22:35 +0000 2015" target="_blank">We will be in The Wulfrun Centre in the piazza opposite Peacocks and Poundland. TweetDeck" title="Wed Jun 03 12:57:36 +0000 2015" target="_blank">For World Sickle Cell day 19/06/2015 we are raising money in conjunction with @krispykremeUK by selling doughnuts at the Wulfrun Centre. TweetDeck" title="Wed Dec 17 15:45:03 +0000 2014" target="_blank">The team are having a 'Coffee Morning' on 23rd December 2014 at the office for service users. Twitter Web Client" title="Thu Jun 19 11:14:24 +0000 2014" target="_blank">RT @sickleSTRONG: World Sickle Cell Day 2014 World Sickle Cell Day 2014 celebrated all over the world by the people on 19th of... http://t… Twitter Web Client" title="Thu Jun 19 11:13:21 +0000 2014" target="_blank">Very successful event last night thank you to all who attended and #WomenInTheatre who made it possible #WorldSickleCellDay Twitter Web Client" title="Thu Jun 19 10:43:05 +0000 2014" target="_blank">Today is #WorldSickleCellDay thanks to all the organisations working hard to raise awareness of Sickle Cell and those affected by it daily Twitter Web Client" title="Tue Dec 10 12:42:21 +0000 2013" target="_blank">RT @Sindiso_Soza: "I will always fall short of Madiba's example, but he makes me want to be a better man" - Obama. #MandelaMemorial Twitter Web Client" title="Tue Dec 10 12:38:43 +0000 2013" target="_blank">#MandelaMemorial the memory of you will never fade... Twitter Web Client" title="Fri May 17 12:59:37 +0000 2013" target="_blank">RIP Nadine... Gone but never forgotten, Kept safe in our hearts, wrapped up like cotton... From all of us at the Project Twitter Web Client" title="Fri May 17 08:58:05 +0000 2013" target="_blank">Our Welfare Reform Event sponsored by @paycare later today at The Novotel Hotel Wolverhampton 6.30pm contact The Project for further details

Beta Thalassaemia Major

If you have inherited a Beta Thalassaemia gene from each parent then there is a 25% chance you will have Beta Thalassaemia Major, the commonest Thalassaemia Disorder. It is a life-threatening condition if it is left untreated. Children born with Beta Thalassaemia Major cannot make enough Haemoglobin in their blood and as a result they become severely anaemic and need blood transfusions every 4 weeks for life and regular injections in order to survive. Parents of children with Beta Thalassaemia Major usually know their child has the condition within the first year of life because shortly after birth the child is quite ill, has jaundice and may have some abnormalities such as growth retardation as well as other complications.

If someone carries Thalassaemia Major then very little Haemoglobin is being produced by the red blood cells. There fore, little or no Oxygen is being transported around the body and as a result the red blood cells of this person look very small, pale and damaged in comparison. This person is usually quite anaemic. People with Sickle Cell Disorders and Thalassaemia Major can also feel tired more often than others. A person with Thalassaemia Major needs regular blood transfusions throughout their life so that new blood cells can be taken from a healthy person to replace the already damaged and broken down cells. As a result to prevent further complications after blood transfusions, Chelation Treatment is required to remove any access iron brought into the body by the fresh supply of blood (this treatment is described later in this booklet).

Blood Transfusions are needed to prevent most complications of severe anaemia caused by ß Thalassaemia Major. When "fresh" blood is transfused into the patient there is a danger of iron overload as the blood carries iron and too much can damage the body and lead to serious problems. As their bodies have no natural way to remove the iron overload a drug called "Desferrioxamine" (also known as an iron chelator) is used to remove the extra iron from the body. Desferrioxamine or "Desferral" is usually given through a pump which is attached to the patient though a needle. The needle is placed under the skin for about eight hours a day for approximately five days a week. Desferral must be given continuously. It can be uncomfortable and noisy but it will help them to be and remain healthy.

Quick fact

Thalassaemia can exist in two forms: Thalassaemia Trait & Thalassaemia Major

Kids section

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