Monday, September 10, 2012

Sickle Cell Awareness Month

In recent years, Sickle Cell Disease Awareness Month rolls around and I become extremely happy because it is one of two times out of the year that I can shout as far, loud, and wide as I possibly can to educate the masses about sickle cell disease. Yes! September is Sickle Cell Awareness month! However, if you follow my column you would know that I talk about sickle cell disease whenever I’m given the opportunity, because I live with the disease myself. In this article I will share a few facts. Sickle cell disease is not only an African American disease, nor is it an African disease. There are many other nationalities and races that have sickle cell disease including: Portuguese, Spanish, French Corsicans, Sardinians, Sicilians, mainland Italians, Greeks, Turks and Cypriots. Sickle cell disease also appears in Middle Eastern countries and Asia. The easiest way to understand it is anyone who tans brown when they go outside has the potential to have sickle cell disease in their ancestry. Believe it or not sickle cell disease actually saved the lives of many in the 1600’s of those living in tropical areas of the world. There was a bad outbreak of malaria and those living with the sickle cell gene did not die because the gene that hurts so many today actually saved the lives of those stricken with malaria. So, even today if there is an outbreak of malaria those living with the sickle cell hemoglobin will be more apt to survive the outbreak. Many don’t understand, including some doctors and nurses; how someone with no outward tell tell signs can be in so much pain. There are still many in the health community who do not know how to treat this disease. This does not surprise me! For many years the statistics said that people living with sickle cell disease would not live pass 20, 30, and surely not 40 years. I am happy to say that places like UAB, right here in our community are making great strides to come up with a cure. With so much technology in urban area hospitals, sicklers are living well pass 50 years old. However, more education and exposure is needed in rural areas where doctors still don’t have much exposure to this disease. So, I know you are wondering what are some of the complications if someone with sickle cell disease is having a pain episode? These are some but not all, of the complications: red bloods cells shaped like a banana creating traffic jam in the blood vessels making it impossible for red bloods to take oxygen that is needed throughout the body. Strokes, infections, leg ulcers, bone damage, jaundice, bone marrow stops making red blood cells, kidney damage, acute chest syndrome, spleen damage, liver damage, loss of hearing and eye sight, and low red blood count are some of the things that can possibly happen. I’ve listed several things that can happen to the body when it is not receiving the needed oxygen. I’ve heard someone with sickle cell disease describe the pain that we feel as broken glass traveling through the veins. Sickle cell disease has no face or identity that can be seen on the outside of any sicklers’ body. I call it a terrorist in my body that invaded my body with no questions asked. This disease is not contagious; it is genetic in form and passed on from parents to their children. It is so important to be tested if you do not know if you carry even one of the genes. Babies are now tested when they are born, but adults still need to know if they have sickle cell disease by being tested. So, I know you are wondering what can you do? Well, I will be hosting along with the Metro Birmingham Chapter of the NAACP and Life South Community Blood Centers the Second Sickle Cell Town Hall Forum on Saturday, September 22, 2012 at The Civil Rights Institute from 10am-4pm in the auditorium. We are challenging all churches in the area to register your church into the competition against other churches in the area; as churches send there members to give blood! Will you bleed for the cause? At the end of the day on September 22, 2012 we will acknowledge publicly the churches that gave the most blood. Those winning 1st, 2nd, and 3rd places will win a prize. So please tell everyone you know who may be interested to come and give blood and learn more about sickle cell disease. There will be 3 panels of experts, free testing, and pharmacy students privately discussing medications with anyone who brings all of their medications. There will be many more activities throughout the month. Please go to my website to get more information and register your church. I would love to come to your church to speak! You can also give any amount of a donation on my website, no amount is too small. I hope to see and meet many of you soon! By Tina Kay Hughes, ,