Story and Photos by Claire Okeke
The 2018 (Re) Imagining Health Conference is an International Biomedical-Sociocultural conference taking place on November 16 – 17, 2018 at the Edmonton Clinic Health Academy, University of Alberta. Its topic is on Sickle Cell Anemia & Thalassaemia. The objective of the conference is to create awareness, to build and inclusive and supportive environment for both Sickle Cell patient, medical staff, and their family members. It is also an avenue to educate and share new research knowledge of the effects of sickle cell disease, as well as, a way to engage the community and the public to combat Sickle Cell Anemia.
On September 30, 2018, at the Diversity Centre, Diversity Magazine spoke to Michelle Patterson, President and Chair of the Sickle Cell Foundation of Alberta and Dr Jean Walrond,Vice Chair of the Sickle Foundation of Alberta in a Q & A on Sickle Cell disease and the purpose of the conference;
Q:For the average person, What is Sickle Cell?
A (Michelle): Sickle Cell is an inherited blood disorder, it gets its name because the cells are typically round like little discs but because the mutation in the gene happens, so some blood cells don’t carry enough oxygen, so then they have a different shape. When the blood cells are sickled like that in this form they also have a different consistency and texture, so they don’t follow through the blood vessels smoothly and can often get caught in the veins in the body. It causes pain in the limbs , causes a lot of organ damage, potential stroke. It’s a very serious condition.
Q: What are the signs or symptoms to identify Sickle Cell?
A (Michelle): Typically most people that get diagnosed with Sickle Cell, they are having a lot of pain without any known origin – its not like you injured yourself, now my leg hurts. It will be very sudden, it will be severe pain, most people will describe it on a scale of 9 out of 10, or 10 out of 10. Typically in the joints, in your knees, your legs, upper arms will hurt sometimes you will get chest pains or abdominal pain. It constant pain that never goes away.
Q: How does an individual know if they have Sickle Cell?
A (Michelle): It a simple blood test actually, most provinces in Canada; Montreal, Ontario, and I believe British Columbia has new born screening from Sickle Cell. We have been told that Sickle Cell will be added to the new born screening panel in 2019, that’s something that the Sickle Cell Foundation of Alberta has been lobbying for over 10 years. It’s just a simple blood test, the earlier you find out the better, the treatments has to start early, you have to be seen by an hematologist, they will put you on penicillin because sometimes young children would develop infections and some have died from these infections.
Q: As a Sickle Cell patient, what are the complications you have faced?
A (Michelle): Well, because your body doesn’t carry enough oxygen, you can overexert yourself – you won’t be able to run long distance for me personally. Because it’s a blood disorder as well, it affects your whole body, any of these capillaries (blood vessels) that are sickled can cause a clot to travel to the brain leading to a stroke, it can cause blindness, affect the heart, lungs, abdomen, spline – the body is busy destroying these sickled cells, so people have either inflamed / enlarged spline or no spline at all, like in my case. https://www.youtube.com/watch?v=eN68kz_aw4I&t=7s&frags=pl%2Cwn
Q: What is the purpose of the conference?
A ( Michelle): Sickle Cell is a very misunderstood disease. There is stigma attached to it – cultural stigma – we just wanted a chance to speak about it and to share with people so they know more about the disease, help to educate patients too, they need to understand the kind of disorder they have. The more they know the stronger advocates they can be for themselves. The technology and the medicine has improved so much over the last few years, there is a lot of information and research that needs to get to the patients and their physicians as well the community.
A(Jean): What we are trying to do is to be able to raise funds for an endowment chair for the study of Sickle Cell Anemia and Sickle Cell treatment at the University of Alberta in addition to that, in terms of blood donations and importance of it, when Sickle Cell patients need blood we have to get from other provinces because our communities do not come forward to donate blood. We have a research project planned, we’ll be starting it in the fall, where we are going to be going out to the communities and talking to them about Sickle Cell Anemia, the importance of being a blood donor, with the hope of increasing the percentage of visible minorities because when you have to receive blood so frequently the closer genetically the person is in respect to the donor and the recipient the less reaction the recipient to the blood, so the research is very important.
Q: Does the foundation have any government support in terms of funding?
A (Jean): To be honest with you it has been a struggle, even trying to get this research off the ground in the fall it took us about 10 years. To be able to get some seed money to do the preliminary research in Edmonton was difficult. The reason why I got interested in doing this research was based on the fact that in 2006 or so, a research document came out looking at the different postal codes for people who donated blood and were able to come to the conclusion that minorities were less likely to donate blood and I thought we should work on. Funding is always a tricky situation, but with our organization we are beginning to a profile in the community and doing this research, expanding it across Canada.
Q: What are the challenges you have faced in trying to create awareness for the disease?
A (Jean): The struggles that we face are two folds; when we talk about dominate society that’s problematic and when you look within the visible minority society there is this taboo to a particular illness – Sickle Cell Anemia – for people of African descent. Instead of taking it on and embracing it, this is something we shouldn’t hide and not want to discuss, we should really go out and take it on, raise the funding for research study and talk about it so that within our own community there no stigma or taboo.
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Michelle Patterson, President and Chair of the Sickle Cell Foundation of Alberta (left) and Dr Jean Walrond,Vice Chair of the Sickle Foundation of Alberta (right).
