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Sickle Cell Anaemia Enigma

Posted on Feb 19, 2008 4:06 PM

Hi, I have always had a burden of how to help alleviate other people's problems, especially those living with chronic and debilitating illness. These led to my joining a healthcare voluntary organization in the 80s, and have been deeply involved since then. While in London I was the Health adviser for a Sickle cell organization, training healthcare personnel and educating families on how best to manage sickle cell crisis. This idea was conceived when I lost my little cousin of seven years old to Sickle Cell Anemia due to lack of proper management of the crisis associated with this sickness. I then started writing a hand book on this issue ....Better ways of Sickle Cell crisis Management'' yet to be Published due to lack of fund. The book is about etiology of Sickle Cell, how it is acquired and the best way to manage its crisis as to live a better and fulfilled life. The main message is about accepting ones uniqueness & to find a way to make life better, since it is a natural blood disorder and it's just like any other disability. It is not infectious as most of us think. There were also issues discussed as to help minimize the stigma attached to this sickness. Thus, instead of looking at it as a hindrance to the future, we can discover ways of making the best out of the situation as '' there is always an Ability in every Disability. This book was inspired by my experience from Sickle Cell sufferers and their families who feel so depressed living and caring for children with this sickness. They kept wondering what life would be, while some began questioning if it was due to their fault? The crisis associated with this sickness affects their day to day lifestyle, which makes life a bit miserable for these affected families. The book addresses very diverse issues regarding marriage, nutrition, physical activities, air travels, water, soda; role of teachers and families among other things, in the life of Sickle Cell suffers. They need to also know the dos and don't in living with sickle cell anaemia. On May 12, 2007 I was on a live show on BBC - London discussing this issue and answering questions from affected people all over the world. I have printed a lot of leaflets which I circulate around to clinics, schools, and public places to spread this information about better Sickle Cell crisis management clues. I have done a lot of outreaches, trainings and workshops on this issue too and it has generated some very open and honest discussions and questions which broke my heart. As for my dreams, I have always been concerned about people who are afflicted in any form at all and this brought me through some very tough times. It is so challenging doing such a voluntary work without substantial fund, only depending on my little income. Don't always know how the bills will get paid, and more importantly how to accomplish my dream of continuing to be able to put smile on the faces of these people. But the passion for this mission/goal is burning so deep inside that I have to trust God to send help as to make a way. There is something special about this quest in me and based on the results and feedbacks I have been receiving I will continue to try with my fingers crossed that doors will open. I donate my time and leisure and ready to donate whatever I can to make sure this goal is accomplished. Please if you have any ideas, suggestions, or support ---. It will be made fruitful. ''Sickle Cell Enigma is an issue hardly talked about but the sickness is very debilitating and terminal too'' Please we need to help them. Thanks for your time to read this...! Dr Ihuoma...
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