By Dr. CHRISTOPHER J. MORGAN
When was the last time you donated blood? Can’t remember? Never? When was the last time you did something to help someone with sickle cell disease (SCD)? In the coming week you will have an opportunity to resolve these questions.
In 2008 the General Assembly of the United Nations recognized sickle cell disease as a public health priority and passed a resolution designating June 19 of every year as World Sickle Cell Day.
In Canada, it is estimated that nearly 5,000 Canadians are living with sickle cell disease (SCD). Ontario has the largest number of carriers and individuals living with SCD with approximately 57.1 per cent of all carriers. Some immigrants to Ontario come from African countries with higher than 25 per cent of their population as carriers and others from countries with 12 to 15 per cent carrier status. According to 2006 statistics, close to 110,000 Black people in Ontario are carriers.
Sickle cell disease is characterized by a modification in the shape of the red blood cell from a smooth, donut-shape into a crescent or half-moon shape. The misshapen cells lack plasticity (flexibility) and can block small blood vessels, impairing blood flow. This condition leads to shortened red blood cell life and subsequent anemia, often called sickle cell anemia. Poor blood oxygen levels and blood vessel blockages in people with sickle cell disease can lead to recurrent acute pain syndromes, increased risk of stroke, increased mortality and reduced life expectancy by 30 years compared to the normal Canadian population.
In an effort to increase the supply of safe, phenotype-matched blood, the Sickle Cell Disease Association of Canada (SCDAC) is celebrating World Sickle Cell Day 2016 by championing blood donation drives across the country. SCDAC is especially seeking donors with backgrounds from the Mediterranean, Middle East, South America, Asia, Africa and the Caribbean.
“The blood donation drive is critical because less than 1 per cent of the current blood donation pool is from the African Canadian community,” said Lanre Tunji-Ajayi, President of the Sickle Cell Disease Association of Canada (SCDAC).
This is relevant because different ethnic communities carry antibodies and other blood features which are more common within that community or population. Simply put, you are significantly more likely to find more closely matched blood from someone within your community than from someone outside of it.
“This is very important for people living with sickle cell, particularly those who require regular blood transfusions, gone are the days when matching someone with O negative to someone with O negative is good enough, they have to have the same phenotype which is the most closely matched blood,” said Tunji-Ajayi, adding that the blood collected (from our community) is marked as special because it is so rare.
SCDAC is encouraging persons 17 years and older to donate at one of the supported clinics across Canada on Saturday, June 18. There will be clinics in Edmonton, Alberta, Halifax, Nova Scotia, Saskatoon and Saskatchewan. There will be four clinics in Ontario: in Hamilton at the Hamilton Blood Clinic, 35 Stone Church Road in Ancaster; in Mississauga at the Heartland Town Centre, 765 Britannia Road West; in Ottawa at 1575 Carling Avenue and downtown Toronto at Canadian Blood Services, 55 Bloor Street West (at Yonge), second floor in the Manulife Centre.
The goal of SCDAC is to have 400 blood donors over this drive.
“We just don’t know whose life it will save, maybe someone in our own family,” said Tunji-Ajayi.
Rashid Barry, who lives with sickle cell in Ottawa and is an active member of the sickle cell community there, has already recruited over 30 young persons to donate on the 18th in his efforts not only to increase sickle awareness among youth but to be willing to donate blood as well.
So let’s all roll up our sleeve, conquer our fears, and help save a life. As Canadian Blood Services’ (CBS) slogan states: “It’s in you to give.”
To register to donate for SCDAC World Sickle Cell Day blood donor drive on June 18, call 1-888-2donate and mention the sickle cell drive and the clinic you plan to attend (or a CBS clinic closer to you). For more information on the drive visit www.sicklecelldisease.ca or call 416-745-4267.
Lillie Johnson, founder of the Sickle Cell Association of Ontario (SCAO) and Order of Ontario recipient, is a fervent advocate for sickle cell awareness and education. She believes World Sickle Cell Day is an excellent opportunity to renew the call for increased sickle cell education among health professionals and community members. She believes it is a “shame that sickle cell is not part of the medical curriculum for doctors and nurses” throughout Ontario and across Canada. Johnson and the SCAO have worked hard to have a course on sickle cell disease recently incorporated into the nursing program at Humber College but other medical and nursing programs have failed to follow suit – so far.
Among community members, Johnson, who is 93 years of age, emphasizes the importance of appropriate genetic counselling and family planning.
“Everyone, especially young people, need to know their sickle cell status – do you have the disease or the trait?” she said.
A simple blood test will give you the answer. Knowing your status and the sickle cell status of the person you’re hoping to start a family with allows you both to understand the likelihood of having children with the disease. For example, a man and a woman both of whom carry the sickle cell trait would have a 1 in 4 chance their child will be born with sickle cell disease, a 1 in 2 chances their child will carry the trait and a 1 in 4 chances their child will neither have the disease nor the trait.
Life with sickle cell is not easy. The recurring bouts of acute bone and joint pain, extreme fatigue, accelerated degeneration of joints like the hip, increased risk of stroke are a few of the challenges faced by people with sickle cell disease which can impact every area of life.
Cindy (not her real name) has spent hundreds of days in hospital, had a hip replacement, numerous blood transfusions and relies on various forms of pain management to get through her days and weeks. Cindy (and others like her) and the physicians who care for her can find it difficult to achieve the right balance between administering at times significantly high doses of strong pain medication to provide the pain relief she needs without developing a drug dependence or adverse drug effects.
Johnson continues to advocate for “holistic care for people with sickle cell – community based care that complements the hospital based care.
“Holistic care allows for the inclusion of social workers, dietitians and alternate forms of pain management like chiropractic or naturopathic medicine,” she said.
An excellent example of the type of holistic community based care Johnson speaks of can be found at TAIBU Community Health Centre in Malvern. TAIBU provides access to a knowledgeable haematologists, chiropractor, physicians, social workers and health promoters that work together to help care for people with sickle cell disease. TAIBU also has a Sickle Cell Support Group that meets monthly to discuss issues and organize events around sickle cell.
TAIBU and the Sickle Cell Support Group will be celebrating World Sickle Cell Day on Sunday, June 19 with a variety of activities and information for the entire family, including a bouncy castle, on the grounds of TAIBU, 27 Tapscott Rd. at Neilson (Malvern Town Centre) from 12 pm – 4 pm.
The Sickle Cell Awareness Group of Ontario, Camp Jumoke and the Black Health Alliance will all be contributing to sickle cell awareness activities to commemorate World Sickle Cell Day and we invite the community to become more informed, participate and celebrate with us.
Dr. Christopher J. Morgan is the director of Morgan Chiropractic & Wellness, an interdisciplinary health centre in Toronto, the founder and former president of the Black Health Alliance, a network of community organizations, health professionals and community members working in partnership to advance the health and well-being of the Black community. He can be reached at 416-447-7600 or firstname.lastname@example.org.