SAVE The DATE Medical Lunch & Learns- Empowering and Educating the medical professionals Event is open to Medical professionals alone.

Transcription

1 Autum: September - November 2012 Volume 1 Issue 7 Inside Youth Corner Save The Date Summer Events September is SCD Month Educating the Medical professionals Contributor Message from our President - Ms. Doreen Alexander CREATING MORE AWARENESS DURING SICKLE CELL MONTH September was declared as Sickle Cell month so, we at Sickle Cell Awareness Group of Ontario (SCAGO) have chosen to use this opportunity to celebrate and create more awareness of the disease. Many, especially those living with this horrific disease might ask the question what is there to celebrate. In all honesty, we do have a lot to celebrate. It has been over a hundred years since Sickle Cell Disease was made known through documentation, and we have established much. There is better treatment and diagnostic testing which indeed have made it easier to diagnose and treat those who are living with the disease. These achievements have taken us a step further for the better and we must continue to take all the small steps necessary until we fully achieve our goal; a cure for Sickle Cell Disease. Creating awareness of Sickle Cell Disease in the month of September is one of the most important objectives for SCAGO, because we need to stop un-informed Sickle Cell births. The way to do this is to educate and inform one person and one group at a time about this disease until it can be totally eradicated. Lobbying the government at all level within Canada and forcing the hands of those in power for comprehensive care and research is another important way of helping those with the disease. On behalf of SCAGO, I am pleading to all to be responsible and get tested for the Sickle Cell Trait gene. Please note that it is a myth that this is a black disease. Many are walking around with the Sickle Trait gene without knowing it and all it takes is simple blood test at the laboratory. I leave you with this question what are you doing to make a difference during the month of September. Be an advocate and assist those who are living with the disease but, most of all be responsible and get tested. There is much to be done; SCAGO need your volunteer time and no time is too little. Get involve and get tested so, we can break the sickle cycle. Mr. Olajide Ayoola Youth Corner Kwabena Boateng SAVE The DATE Medical Lunch & Learns- Empowering and Educating the medical professionals Event is open to Medical professionals alone. September 14th Rouge Valley Centenary Hospital September 17th North York General Hospital We at SCAGO would like to take a moment to introduce the newest edition to the organization, Kwabena Boateng. Kwabena will be heading up the Youth & Patient Programs. Kwabena has a very accomplished background, aside from a Public Relations degree he is well versed in program management, event logistics, media relations, grassroots marketing and strategic marketing. We are very pleased to have him as a member of SCAGO. September 21st Humber River Hospital ( Finch site) September 24th Humber River Hospital (Church site) Awareness at Hospital for Sick Kids (HSK) September 18th At the Garden Terrace by the Atrium. SCAGO and HSK is pleased to continue to raise more awareness during the Sickle Cell Awareness Month. We also acknowledge the fact that September is also Pediatric ( childhood) cancer awareness month.

2 An interview with Mr. Olajide Ayoola Editor of the only online Sickle Cell Magazine worldwide. What is the reach of the sickle cell journal? We have readership (print edition) across West Africa particularly Nigeria, Ghana and Sierra Leone. However, since we declared every edition free online (19th June 2012), we have readers from around the world What motivated you to start the journal and for how long has it been in circulation? The maiden edition rolled out January A quarterly magazine, we have produced 19 vintage editions to date. We changed the name to SICKLE CELL NEWS in The motivation for establishing the magazine was borne out of personal experience. I was diagnosed with HbSS in As I grew up, I learnt more about the condition both from the personal standpoint of pain, frequent blood transfusion and repeated hospitalization; I saw close relatives struggling with and succumbing to the condition My interest in sickle cell began in my teens when I tried to find out as much as I could about the enigma within me. For my masters degree in 1987, my research project had to do with Anxiety and depression In Sickle Cell Anaemia and eventually wrote my autobiography, Menace In My Blood in 1992 In 2006, I decided to retire from my journalism practice of about seventeen years with various newspapers and magazines in Nigeria. Then you could say out of the blues I was prompted to start a news-magazine devoted to sickle cell practically the first of such in the world. Hitherto I had made the uncomfortable discovery that even well educated people (outside the medical and paramedical sciences) knew so little about sickle cell. In my opinion, ignorance is the greatest cog in the effort to reduce the spread of sickle cell. How do you help readers living with SCD deal with psycho-social issues surrounding SCD? First, we help readers to come to terms as far as possible with the condition. We interview role models with SCD to demonstrate to readers and their parents that SCD is no barrier to achievement. We also stress the need for self-acceptance and the buildup of self-esteem where it has been eroded by social interaction. What is the future goal of the Journal? Our goal now and in the future is to see that everyone everywhere, particularly single men and women, is sickle cell compliant. Singles must know their genotype and its implications for their offspring. Our objective is to help reduce to the barest minimum the incidence of SCD in Africa. A complete cure may be long time coming so our goal is prevention, prevention and prevention. Is the journal affiliated with any organization/ association? In 2011, the Sickle Cell Disease Association of America (SCDAA) appointed us media partner for their 39th annual convention. We are in touch with every sickle cell club/organization in the West African sub-region. Do you organize events or activities in conjunction with the journal? We undertake enlightenment seminars at schools and religious institutions in Nigeria. Efforts to do the same at corporate organizations are under way. We are also in the process of registering an NGO called African Sickle Cell News Foundation to take over these activities so that we can fully concentrate on the publishing arm of our objectives What do you think of the efforts of the Global Sickle Cell Network- Nigeria? I think the Network would make a better job of rallying round citizens with SCD in Nigeria than we have now. 2

3 Glimpse into our Summer Activities Summer was definitely busy at SCAGO. From Dr. Cyrus Picnic on July 8th to the Toronto Carribbean Carnival event on August 2nd and Michael Cooten picnic on August 13th; it was all fun, jumping and sickle cell awareness in the community. We are pleased to share some of the pictures below. Dr. Cyrus Picnic in Scarborough

4 Toronto Caribbean Carnival - Allan Lamport Stadium Awareness Event We are grateful to the Board of the Toronto Carribbean Carnival and our volunteers who helped to raise the much needed awareness at Allan Lamport Stadium. Breaking News!!! We have new additions to Our Board Membership. Stay tuned for our Winter Newsletter to see the New Faces. See you in Winter Featured Article. Stroke could be symptomatic or non-symptomatic. To empower patients and their family members with more knowledge about strokes in sickle cell disease; our July learning for Life Session workshop was all about this important topic. For those members and patients who could not attend; feel free to read the presentation by Dr. Kevin Kuo of Toronto General Hospital

5 5

6 6