I thank Francoise Nwabufo (HIFA member, Cameroon) for reminding me (in our first HIFA moderation team meeting, on Zoom - more to follow) that today is World Sickle Cell Day!
Below is some information from the Sickle Cell Society https://www.sicklecellsociety.org/wscd/
The 19th June is World Sickle Cell Day – a day of raising awareness!
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.
HIFA invites volunteers with an interest in Sickle Cell Disease to help us understand better the information and learning needs of patients, families and health workers, and how these needs can be better addressed.
Failure to provide, access and apply reliable healthcare information is arguably the world's leading cause of avoidable suffering from sickle cell disease.
Best wishes, Neil
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HIFA profile: Neil Pakenham-Walsh is coordinator of the HIFA global health campaign (Healthcare Information For All - www.hifa.org ), a global community with more than 20,000 members in 180 countries, interacting on six global forums in four languages (English, French, Spanish, Portuguese). Twitter: @hifa_org FB: facebook.com/HIFAdotORG email@example.com