Sickle Cell Disease - 100 Years Later

2010 marks the centennial since the first formal report of sickle cell was documented in the United States. Dr. James Herrick was the doctor that documented that case in 1910 although hospital intern, Dr Earnest Irons, discovered it. There have been a lot of advances in regards to understanding the disease and how it affects those with the blood disorder, but awareness is lagging behind.

This may have more to do with those affected by the disease than any other one factor. I have found that there has been a shroud of silence within the sickle cell community and although there has been a concerted effort to break this silence, people are still very reluctant to expose their struggle with this disease. Personally I understand the silence because sickle cell is a disease that wages its war against the one who has it as well as the entire family unit. For many years I wanted nothing but to die. I never expressed it to anyone, mainly because I couldn’t admit it to myself. My mother was my one and only advocate and I never had to worry about anyone being insensitive to my needs because she had it covered. It was her dedication that allowed me to focus on getting better without having to fight my way through the systems that be and when she passed I found myself battling sickle cell alone. It was such a heated battle that I was unable to find a reason to live. I wasn’t going to kill myself, but I was determined to stop fighting. One day I woke up and realized that if I was going to fight back and experience a reasonable quality of life I needed a new support system.

It wasn’t long before I met a man that I consider to be my personal guardian angel, Mr. Dan Moore, Sr. He is a veteran filmmaker, author and historian. He is the founder of APEX Museum, an African American history museum in Atlanta, GA and the founder of Marrow For Life, an organization that educates people of the need for more African Americans on the National Bone Marrow Registry.

Mr. Moore is responsible for motivating me to start SCD Soldier Network, Inc. a registry of volunteers dedicated to supporting those with sickle cell disease. He has also been very instrumental in helping me to break my own silence. I walked into his office one day to chat about the progress that I was making in recruiting new volunteers and I was approached with the offer to co-author a book with him. I didn’t know what to do with that offer but accept it. I asked what my contribution would be and he responded by telling me to just tell my story. I finally had a platform in which to garner support for myself and every other person affected by sickle cell. It was perfect timing and he made it possible for us to release the book on June 19, 2010 in observance of World Sickle Cell Day.

There are many approaches to support, but the SCD Soldier Network’s commitment to its front-line soldiers (those who have SCD) is to do whatever it takes to keep them from falling through the cracks. Oftentimes people just need a point in the right direction while others need to be taken by the hand. When you are doing all that you can to survive this disease you need people in your corner, who will cheer you on, address issues that you are unable to and be there if you ever find yourself in need of help. Our volunteers will get the training needed to understand our approach and have the tools available to implement that kind of support.

September is Sickle Cell Awareness Month and I will be promoting the book that I co-authored titled Sickle Cell Disease 100 Years Later. It chronicles my battle with sickle cell and how it led me to the formation of SCD Soldier Network, Inc. It also includes the stories of others who battle the disease and gives information about the history of the blood disorder.

2010 is the year that many of us will be able to proclaim as the year that sickle cell gets its voice. Many people are standing up and speaking out in order to bring greater awareness to the disease. SCD Soldier Network, Inc. is developing a comprehensive advocacy program that will prepare its volunteers to speak with a unified message. We are hoping to host our first boot camp styled training in 2011. This will be an event where those in our database will be processed and cleared to advocate in their hometowns.

I am looking forward to closing out this year by beginning the work of a new kind of awareness. Statistics are just not enough. Until those numbers get a face and voice they won’t mean anything to anybody. Do your part to spread the awareness by becoming a volunteer at SCD Soldier Network, Inc.

With a donation of $15 or more you can request your choice of an autographed copy of the book Sickle Cell Disease 100 Years Later or A Commemorative World Sickle Cell Day T-Shirt. You may also order the book online at www.amazon.com or our e-store at createspace.

Your support is greatly appreciated and be sure to stay tuned to my monthly animated series on youtube “Will Sickle Cell Get its Grown-Up Voice”.