World Sickle Cell Day 2019

World Sickle Cell Day 

The 19th June is World Sickle Cell Day and this year the Sickle Cell Society is celebrating 40 years of working in the sickle cell community.

World Sickle Cell Day is a United Nation’s recognised day to raise awareness of sickle cell at a national and international level. On 22nd December 2008, the United Nations General Assembly adopted a resolution that recognises sickle cell disease as a public health problem and “one of the world’s foremost genetic diseases.” The resolution calls for members to raise awareness of sickle cell on June 19th of each year at national and international level.

What is Sickle Cell (SCD)?

Sickle cell disorders are a group of illnesses which affect your red blood cells. Sickle cell is a genetic condition, which means it is passed on from your parents and you are born with it; you cannot catch it from other people.

Sickle cell disorders causes your normally round and flexible blood cells to become stiff and sickle shaped, stopping the blood cells, and the oxygen they carry, from being able to move freely around the body and causing pain. This can cause  episodes of severe pain. These painful episodes are referred to as sickle cell crisis. They are treated with strong painkillers such as morphine to control the pain.

People with sickle cell are also at risk of complications stroke, acute chest syndrome, blindness, bone damage and priapism (a persistent, painful erection of the penis).

Over time people with sickle cell can experience damage to organs such as the liver, kidney, lungs, heart and spleen. Death can also result from complications of the disorder. Treatment of sickle cell mostly focuses on preventing and treating complications.

Symptoms of Sickle Cell

Chronic (long term) anaemia – when there are not enough red blood cells or Hb in your body.

Unpredictable Pain (crisis) – When the blood vessels get blocked, it can cause pain and swelling in the area, also known as a crisis.

You may get tired easily or experience fatigue – constant tiredness, feeling weak or lacking in energy because of the anaemia.

Jaundice – yellowing of the whites of the eyes and skin.

Did You Know?

  1. SCD is inherited from both parents; sickle cell trait is inherited from one parent.
  2. SCD can affect anyone, although it predominantly affects people from African and Caribbean backgrounds.
  3. 1 in 76 babies born in the UK carry sickle cell trait.
  4. Approximately 15,000 people in the UK have sickle cell disorder.
  5. Approximately 270 babies with SCD are born in the UK every year.
  6. A simple blood test will tell whether you have sickle cell trait or the disorder
  7. Children with SCD are at increased risk for stroke, the risk is highest between the ages of 2 and 16.
  8. Episodes of pain may occur in sickle cell disorder and are generally referred to as a crisis

The only possible cure for the disorder is bone marrow transplant but this is only possible for a limited number of affected individuals who have a suitable donor. A medicine called Hydroxyurea, can significantly reduce the number of painful crises.

The Sickle Cell Trait

Sickle cell trait is inherited when only one of your parents has passed on the sickle gene, and will never develop into sickle cell disorder. You do not have symptoms from sickle cell trait, so it is a good idea to have a blood test to see if you have sickle cell trait. If you have the trait, the majority of red cells in the blood are normal round shaped cells. Some sickle shaped cells may be present under certain conditions.

The trait is not an illness, but if you are planning to have children, then certain factors have to be considered.

If your partner does not have sickle cell trait, then any children you have will not have sickle cell disorder, but they could have the trait (50% chance).

If you and your partner both have the trait, there is a 25% chance that any child conceived may have sickle cell disorder and 50% chance they will have the trait.

Click here to learn more about sickle cell trait

Celebrating 40 Years

This World Sickle Cell Day, the Sickle Cell Society will be celebrating 40 years of supporting the sickle cell community. First set up as a registered charity in 1979, the Sickle Cell Society works alongside health care professionals, parents, and people living with sickle cell to raise awareness of the disorder. The Society’s aim is to support those living with sickle cell, empowering them to achieve their full potential.

The Society is involved in a range of projects, from working with young people and children through activities, mentoring and an annual holiday, to running a national helpline, developing resources and working with the All-Party Parliamentary Group for Sickle Cell and Thalassaemia on research. 

Events

To celebrate 40 years of supporting the sickle cell community, the Sickle Cell Society are hosting a range of events including: Sheffield Patient Education Day (Book here), Thanksgiving Service (Book here) and our Annual General Meeting (Book here)

Fundraising Gala Ball

Join us as we celebrate 40 years in style. The 40th Anniversary Gala Ball will be a fantastic evening of food, music and entertainment. Hosted in the spectacular Royal National Hotel in Central London, the 40th Anniversary Gala Ball celebrates 40 years of working within the sickle cell community.

You are invited to join the celebrations, starting with a red carpet drinks reception attended by the Society’s Prestigious VIP guests. All guests will be seated at tables, before helping themselves to a delicious hot three-course buffet. There will be music during dinner, setting the tone of this celebratory event.

Dinner will be followed with performances by top entertainers, and all guests have the chance to win unique prizes at the Charity Raffle.

Then the dance floor is opened so you can dance the night away to midnight.

Buy your tickets here: https://scs40galaball.eventbrite.com

40th Anniversary Appeal

For 40 years, the Sickle Cell Society has been delivering research and educational projects, supporting individuals and families and influencing policy.

As well as celebrating the achievements of the Society, we need your help to ensure we can continue to make a positive difference to people affected by sickle cell over the next 40 years.

Your support is invaluable to us. We’re asking you to fundraise, donate, take part in, or run your own event, volunteer or help us raise awareness. Every bit of help from you will make a difference.

Please help us to achieve £40,000 and make our 40th Anniversary appeal a success!

Click here to donate or create your own fundraiser

Become A Member

The Sickle Cell Society is a patient led organisation, our work is to benefit and improve the overall quality of life for patients as well as support those that are caring for them.

Becoming a member is the best way to be kept informed with the latest news, events, and resources. Membership is completely free and entitles you to:

  • The right to vote at the AGM (find out more here)
  • Bi-annual newsletter and monthly e-newsletter to keep you abreast of national developments including policy, service development, research, treatment and ongoing management of the condition.
  • Invitation to attend our free events so you can hear first hand of the work being done nationally and giving you the opportunity to network with others in similar circumstances
  • Signposting to sources of support support including information, advice and advocacy
  • Involvement with patient and carer focus groups related to research and development

Become a member for free, today: https://www.sicklecellsociety.org/membership/