World Sickle Cell Day- June 19
Join us to Raise Awareness and Help Reduce Stigma and Discrimination Experienced by Families with Children, Youth, and Adults Living with Sickle Cell Disease.
The World Health Organization (2006) and the United Nations (2008) have recognized sickle cell disease as a global public health priority and in order to raise awareness of the disease, designated the 19th day of June every year as World Sickle Cell Day (WSCD). The World Health Organization (WHO) estimates that sickle-cell disease affects nearly 100 million people worldwide and over 300 000 children are born every year with the condition.
Tragically, the majority of these individuals will die in childhood due to a lack of basic care, and those who survive into adulthood too often face a life of chronic disability and premature death unless disease-modifying therapy can be provided.
The WHO, therefore, urges countries affected by Sickle Cell Disease to establish health programs at the national level and to promote access to medical services for people affected by the disease
Quality of Sickle Cell Disease Care in Canada
The Sickle Cell Awareness Group of Ontario recognizes Sickle Cell Disease as an increasingly important medical issue in the province. Out of the estimated 6000 Canadians affected by sickle cell disease, 3,345 live in Ontario and over 65% of babies born with the disease nationally are born in the province of Ontario. While the possibility of a cure by gene therapy has continued to make headlines, the basic quality of care provided to sickle cell patients in Canada remains well below the standard of care recommended by experts in the field.
Furthermore, patients with sickle cell disease continue to be stigmatized and are branded as “drug seekers” when presenting for medical treatment of severe vaso-occlusive pain crises. Many SCD patients in Canada do not have access to comprehensive care, which could prevent those crises.
Reducing Stigma and Discrimination:
Through its awareness, education, and advocacy programs, SCAGO is doing its part to reduce the stigma and discrimination faced by the families affected by Sickle Cell Disease.
Awareness among the Provincial and National Policy MakersIt is noteworthy that on June 3rd, 2021, through the advocacy work of the Sickle Cell Awareness Group of Ontario, Bill 255 passed in the Ontario Legislature and June 19 becomes Provincial Sickle Cell Awareness Day. Read the Provincial Sickle Cell Awareness Day Act here
Similarly, on November 22nd, 2017, through the advocacy work of the Sickle Cell Disease Association of Canada and its member organizations including the Sickle Cell Awareness Group of Ontario, Canada recognized June 19th as National Sickle Cell Day. Read the National Awareness Day Act here
Join our Campaign and Let us Know What World Sickle Cell Day Means to you!
It’s because of you, that we have been able to continue to raise awareness and expose the inequities faced by people living with sickle cell disease in the province of Ontario. World Sickle Cell Day means something to us, and we know it means something to you as well.
In recognition of World Sickle Cell Day, we are asking you to send us a brief quote (max 200 words) and a headshot or a 30-second video by June 6, on what this day means to you.
Ten Tweetable Facts about SCD
- #SickleCellDisease is 1 of the most common inherited diseases with > 5000 people with #SCD in #Canada + that number is growing
- Walter C Noel, a Grenadian dentist, 1st a person described with #SickleCellDisease > 100yrs ago. A #BloodTest can diagnose carriers of #SCD
- Persons with #SickleCell #trait carry abnormal hemoglobin #genes but have no symptoms. Get tested-check ur risk of passing #SCD to ur child
- #SickleCellDisease affects O2 carrying red cells. Red blood cells become rigid, #sickle shaped + break easily causing #anemia + #jaundice
- Sickled cells block blood vessels and cause severe #pain + #suffering in persons with #SickleCellDisease. Pain may last for days or wks
- #SickleCells block blood vessels affecting blood flow + O2 delivery. This can cause permanent damage to organs including the brain + kidney #SCD
- In #SickleCellDisease blood can become trapped in the spleen/liver causing shock and death. An urgent #BloodTransfusion will #SaveALife.
- Children with #SickleCellDisease have a high risk of stroke. Early exchange #BloodTransfusions can #SaveALife + reduce disability in kids
- Stroke in high-risk children with #SickleCellDisease can be prevented with regular #BloodTransfusions – happy bright #HealthyKids!
- #Pregnancy can increase problems in women with #SickleCellDisease. Transfusions can save both the mother’s + baby’s life #SaveALife
World Sickle Cell Day Hashtags: #WSCD, #WhatWSCDMeanToMe #SickleCellAwareness; #OntarioSickleCellDay, #SCAGO.
Media: For June 19 story/interview opportunities, contact: firstname.lastname@example.org or call 416-951-6981 (cell). We thank you in advance for your interest and time.
For educational videos on various topics relating to Sickle Cell Disease, visit: https://www.youtube.com/user/scagovids
Sickle Cell Awareness Group of Ontario also known as SCAGO is the largest patient support and advocacy association serving families with children, youth, and adults with sickle cell disease. It was established in 2005 to:
- Improve treatment and care received by patients living with Sickle Cell Disease by providing education on the disease to medical and allied health professionals.
- Educate the community on Sickle Cell Disease and sickle cell traits with the expected outcome of reducing the number of new births with the disease.
- Support those living with the disease by providing access to life-enhancing programs not limited to peer support group meetings, scholarships, emergency grants, self-management skills, and counseling navigation.
- Advocate on their behalf with the government, school, and workplace.
What is Sickle Cell Disease?
Sickle Cell Disease or sickle cell anemia is a hereditary genetic disease characterized by the presence of abnormal crescent-shaped red blood cells. People with Sickle Cell Disease have abnormal haemoglobin (called haemoglobin S or sickle haemoglobin) in their red blood cells. Haemoglobin is a protein in red blood cells that carries oxygen throughout the body. The lack of tissue oxygen can cause attacks of sudden, excruciating, and severe pain called pain crises. These pain attacks can occur without warning, with pain levels often described as higher than childbirth labor pain and cancer-related pain.
The red cell sickling and poor oxygen delivery can also cause organ damage. Over a lifetime, Sickle Cell Disease can harm a person’s spleen, brain, eyes, lungs, liver, heart, kidneys, joints, bones, or skin. It can cause a stroke in children as young as two years of age! At the present time, hematopoietic stem cell transplantation is the only cure for Sickle Cell Disease.