Since I suffer with the affects of a blood disease known as Sickle Cell Anemia, I felt the need to join in on the Sickle Cell Anemia campaign. September has been declared as Sickle Cell Anemia Awareness Month and I would like to see everyone learn something about Sickle Cell that they did not know. In order to help educate you on the disease, I am providing links on this blog so that you are able to seek out a better understanding of the disease from a medical viewpoint. My mission is to put a face on this disease that primarily affects African Americans. Although other ethnic groups are known to suffer with the disease it is a black issue of sorts. I am saddened by the number of people that carry the Sickle Cell trait and have no idea what that means. Since most people with the trait have no medical issues, they don’t think about it until they produce a child with the disease. I was born in 1964 and both of my parents had the trait, but they did not know it. At the age of six months old, I was diagnosed with Sickle Cell Anemia. The doctors did not explain that because the both of them had the trait, there was a one in four chance of having a baby with the disease and a two out of four chance of producing a baby with the trait. I have an older brother and my parents had two more children after me without really knowing that the odds were against them for not producing another child with the disease. My father remarried and had another daughter with the disease. This did not have to happen and in this day in age it should not be happening. If you find out that you have the Sickle Cell Anemia trait, please use due diligence in making sure that your sexual partner does not have it. Two people with the trait can have a baby with a disease that causes pain that is too awful for words to describe. I have overcome so many obstacles and have beaten the odds so many times that I am in awe of God. My struggle to maintain a “regular” life has been an uphill battle. My many talents and gifts have motivated me to keep going during times when I wanted to give up. I am now 45 years old and I was able to have one child, who is now 25 years old. She has made me a grandmother of a little girl that I call mini-me. I married the first man that I fell in love with and helped rear his daughter who calls me mom.  I am by all counts a blessed woman and that is why I can’t sit by while September comes and goes without blowing the trumpet to send out the call of awareness. I now have Iron overload due to all of the blood transfusions that I have received. I have a mediport in my chest, which is used to draw blood specimens and administer fluids and pain medication. I don’t have as many pain crisis as I have had in the past, but they do occur quite often. There are degrees of pain crisis and on a daily basis I am in pain. About twice a month I have a crisis that keeps me in the bed and every 3 months or so I am hospitalized for the extreme crisis that I can’t manage at home. I have so many ideas and aspirations that are but dreams. I have not given up, but I am managing with the deck that I have been dealt. People wonder why I spend so much time on the internet and the truth is, it’s my social avenue. I don’t hang out in the streets of Atlanta and I don’t hob nob with the “who’s who”, but I am connected through my blogs, facebook, myspace and twitter. When I’m in the hospital I can still look at my post as I begin to recover. I really can’t detail how awful it is to have Sickle Cell Anemia because there are so many facets to cover. I would have to write a book and maybe one day I will find the inspiration to do just that. It’s my life and I don’t expect anyone to really understand it, so I had to introduce you to a video of an 18 year old young lady who recites a poem describing our struggle. This video is just a snippet of Russell Simmons Present New Voices, which aired on HBO. Please watch it and comment on your reactions to it. If you have Sickle Cell Anemia I want to know about it, because I want to be sure to lift you up in prayer. I hope that my effort to get the word out will result in making someone aware of this disease who otherwise wouldn’t know anything about it.

When my body begins to produce a large amount of sickle cells, my eyes are more yellow than normal and my mood begins to turn somber. It is family and friends that notice it first. My mother was the first person to tell me that I needed fluids or that I should rest a little because it looked like I was going into a crisis. I begin to read my body’s signals later on in life and that has helped me to survive this disease. I didn’t meet my step-sister, Kim until I was an adult and it was so amazing to see how much we were alike. My other siblings were Sickle Cell free and though they could empathize, they could never know my pain like Kim did. Not only did we look alike we wrote alike and liked the same foods. She died from complications of the disease and I had to face my own mortality. I don’t think I could have done it without the help of one of my best friends who also has Sickle Cell Anemia. With my mother and Kim being deceased my friend TJ keeps me reminded of the things I need to do when I feel a crisis coming on. The crazy thing about having a pain crisis is that the pain is so severe that you can’t think. You need an advocate who is aware of what pulls you through. I would advise anyone with Sickle Cell Anemia or in fact any disease, to have someone in your corner to talk, think and pray for you during times when you can’t. I never wanted to meet other people with the disease because I thought it would be depressing, but it was the best thing that ever happened to me. I met a group of young ladies in the hospital and we all became friends and advocates for each other. Although I’m not as close to most of them as I am with TJ, I will always be there if they ever need anything and I keep them in my prayers. I have lost a few of them due to this horrible disease, but I am still encouraged to meet others who are just like me. My husband and I have gone through several separations and I don’t know if many people understand why our bond is still so strong. I think that it is because I understand the weight that this disease has on loved ones. Sickle Cell Anemia is a disease that affects an entire family. My daughter had to go weeks at a time without me in the home and my husband had to deal with not being able to help his wife, who may or may not pull through this time. My step-daughter came to live with us when she was a teenager and I was as reliable as her drug addicted mother. I say that because we never knew when a pain crisis would happen and I would just disappear from the home. Now my daughter is a flight attendant and she and my granddaughter live with me. Whenever I go into the hospital it affects them, because my daughter has to adjust her work schedule (it’s a blessing that she has that type of flexibility on her job) and when I come home my granddaughter sleeps with me for days, until she feels comfortable that I’m OK. It tears me up when I think about the type of life my kids had to endure because of this illness, but for them it was just their life. I wanted so much more and being a mother is very important to me, because I had the best mother on earth. I think that young women are drawn to me because of the mothering instinct that I possess and I try to make sure that I maintain my relationship with my own daughter, because she does get jealous when she sees me developing that mother relationship with others. So if you know someone with this disease let them know that you are there for them and think of the little things like bringing their child to the hospital to visit them or cooking a meal for their family when they aren’t feeling so well. It will be more than you ever thought it would be.