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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

What is Sickle Cell Disorder?

If you carry Sickle Cell Disorder you have inherited sickle haemoglobin (Hb S) from both parents. Therefore you have Hb SS. Other common disorders include Sickle-Beta Thalassaemia disorder, Sickle-Haemoglobin C Disorder and Sickle-Haemoglobin D Punjab Disorder.

Having Sickle Cell Disorder (H SS) means that most of your red blood cells do not contain enough haemoglobin and so these cells are damaged and shaped in the form of a "sickle". Compared to someone who has Sickle Cell Trait a person with Sickle Cell Disorder carries more sickle shaped cells and under certain conditions these Sickle Cells, which are not round and soft like that of a normal person, become sticky and get trapped within the blood vessels.

As a result Oxygen cannot get to the important cells, tissues and organs of the body. When this happens to a person with Sickle Cell Disorder the trapped cells cause episodes of mild, moderate or severe pain in parts of the body and this is called Sickle Cell Crisis. The red blood cells of a person with Sickle Cell Disorder get broken down faster as "sickling" damages the blood cells causing them to become more fragile (causing anaemia and other health problems). This pain can occur at any time, the most common place to experience this pain are the hands, arms, legs, abdomen, back or head. These painful crises can last for hours, days or even weeks. Several things can trigger a painful crisis in a person with Sickle Cell Disorder, These include,

  • Stress - e.g. exams, relationships, stress, labour when pregnant.
  • Exercise - where not enough Oxygen gets to the red blood cells.
  • Dehydration - not drinking enough water ( this does not include fizzy drinks) can mean the blood becomes thick and sticky which results in red blood cells not being able to travel through the blood vessels easily. Avoid too much alcohol, which can make Sickle Cell Disorder and it's symptoms worse.
  • Cold Weather - where blood vessels become narrow and cells cannot flow through easily. This can also be the case after swimming, so it is very important to dry off well and wrap up warn after swimming and make sure the water is warm before you enter it.
  • Smoking - drugs and smoking should also be avoided as some people with Sickle Cell Disorders are prone to having lung problems.

Someone who has Sickle Cell Disorder can lead as normal a life as possible and take part in lots of activities, however you have to remember to take into consideration the above things and learn as much as you can about these disorders as well as seeing your doctor to manage the conditions as best as you can.

If you have a Sickle Cell Crisis then you may experience pain differently to another person who has the same condition. You can manage mild pain at home by taking painkillers or having warm baths / relaxing massages and keeping well hydrated. You can take your mind off the pain by doing other things such as chatting to a friend, reading, watching TV. You may experience a crisis, which is very painful, this may mean you need to be admitted to hospital where stronger medication such as morphine is available. It is important to let someone know as soon as you feel you may be experiencing a crisis so that medical advice can be sought immediately.

People with Sickle Cell Disorder are more prone to catching infections such as Maleria, Colds, Pneumonia, and Salmonella so it important to take antibiotics daily as prescribed by your doctor. Antibiotics help the body to fight infection. It is important to avoid eating foods where there may be a high risk of contracting Salmonella. Keeping to a healthy diet (i.e. 5 portions of fruit and vegetables a day) is important as these contain essential vitamins and minerals. Fruit, and in particular liver or leafy green vegetables contain folic acid which is a vitamin that helps the body to produce new blood cells. Doing this will also strengthen the body's natural immunity against infection.

A person with Sickle Cell Disorder can also have other complications such as,

  • Bedwetting - as the urine is very dilute due to the high intake of liquids to stop dehydration.
  • Stroke - because of the Sickling of the blood cells in the brain.
  • Priapism - a painful erection of the penis where there as been a "sickling" of blood cells.
  • Leg Ulcers - because blood cells can "sickle" in the legs and ankles due to the pressure of standing.

If you have a very bad crisis the doctor may feel it is necessary to give you a blood transfusion. This helps to reduce the level of anaemia and the amount of sickle haemoglobin the body is producing and to help prevent frequent strokes (see section on Thalassaemia Major for more information on blood transfusions).

Hydroxyurea - is a drug given to young people and adults with severe Sickle Cell Disorders. It helps to decrease pain episodes and complications. Bone Marrow Transplant - This is where a matching donor who does not have Sickle Cell Disorder volunteers to donate their bone marrow (where blood cells are produced) to a person with Sickle Cell Disorder. The donor must be a perfect match and this is usually a Brother or a Sister. This is the only known cure for both Sickle Cell Disorders and Thalassaemia Major although this is rare.

Quick fact

As well as the Asians thalassaemia also effects people from mediterranean, Middle Eastern and African Caribbean descent.

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