Bec Goodyear presents Sickle Cell Society Ireland’s newest unique initiative to raise awareness.
Earlier this year, the Sickle Cell Society Ireland (SCSI) held a ‘Colours of the Sickle Cell’ Masque ball for their 11th National World Sickle Cell Day celebration. This event raised money for Sickle Cell anemia research and awareness of this hereditary disease.
Predominantly affecting Black communities worldwide, this type of anemia involves disorders of the red blood cells that carry oxygen and nutrients around the body. There are several subtypes, but all involve a child inheriting two abnormal copies of the gene that codes for haemoglobin. Normal red blood cells are shaped like a flat disk, a critical characteristic that helps them carry molecules around the body. Sickle Cell diseases cause the red blood cells to become a crescent or sickle shape, which reduces their ability to carry molecules and can cause blockages in blood vessels. As the disease is recessive, meaning that a person needs two abnormal genes for the disease to present itself, it is improbable that parents of children with Sickle Cell anemia will realise that they carry the gene without genetic testing.
The SCSI is an organisation created by Esther Onolememen, current PhD student and mother of two children with Sickle Cell Anemia, in response to research she conducted that found a significant lack of support for people in Ireland with the disease. National World Sickle Cell Day has been commemorated each year on June 19th since its creation in 2008 at the United Nations General Assembly. This year, the SCSI celebrated the day with a Masque ball on the 17th of June. The ‘Colours of Sickle Cell’ project was the focus of the ball, which, according to the SCSI, uses “music, fashion, drama and comedy to depict how people living with sickle cell can achieve their potentials and live beyond the limitations of having sickle cell anemia”.
Although the event was a colourful celebration, including a fashion show and other festivities, the commemoration of 22-year-old Reme Onolememen was a stark reminder of the severity of these diseases. Reme, daughter of founder Esther Onolememen, died on March 1st this year at St James’ Hospital from complications associated with Sickle Cell anemia. She spent around 24 hours in the emergency department before eventually being moved to ICU, where she died. Reme was a Youth and Community Development student from Dublin and had walked at last year's Colours of Sickle Cell fashion show. A clinical review of her care has been requested by her family and was submitted by the Irish Patients Association.
The Sickle Cell Society Ireland continues to fight for more awareness regarding these diseases and better treatment for those with Sickle Cell anemia. Their efforts have positively impacted patients with Sickle Cell and those treating patients with the disease, with education lectures being held for GP trainee students. Unfortunately, there is still a long way to go regarding Sickle Cell awareness and treatment. Still, society is bringing these diseases to the forefront with their events and supporting patients at each step of their journey.