I have had the pleasure of meeting one of the most positive people that I can imagine. Mr. Jerrie'me Wright has been nothing short of motivational and supportive of the many ideas I have shared with him. To let him know just how valuable and influential to others, I am dedicating this month's post to him in honor of Sickle Cell Awareness month. In the midst of having Sickle Cell, Jerrie'me continues to show his strength and does not waver from his mission one bit. So before the month ends, I just had to share with you his responses to the questions I asked to become more aware of Sickle Cell.
How long have you been aware of your Sickle Cell Anemia disease?
"Sickle cell is an inherited blood disorder; therefore, individuals who carry the SS gene are born with it. However, I have been aware of this disease as far back as the early 90's. So, I would say about 4 or 5 years of age, when I could actually recall having sickle cell crises."
"Sickle cell is an inherited blood disorder; therefore, individuals who carry the SS gene are born with it. However, I have been aware of this disease as far back as the early 90's. So, I would say about 4 or 5 years of age, when I could actually recall having sickle cell crises."
How did you come to understand it?
"I came to understand this disease while coming to age. My older sister, Monica, lived with sickle cell disease. So, I came to understand it not only from my point of view, but Monica's point of view as well. To come to understand sickle cell from her point of view, as well as my point of view, was a humbling experience. Nonetheless, today, I am still coming to understand sickle cell disease."
"I came to understand this disease while coming to age. My older sister, Monica, lived with sickle cell disease. So, I came to understand it not only from my point of view, but Monica's point of view as well. To come to understand sickle cell from her point of view, as well as my point of view, was a humbling experience. Nonetheless, today, I am still coming to understand sickle cell disease."
What is the difference between sickle cell trait and the sickle cell disease?
"Great question. Someone without sickle cell disease have normal hemoglobin (AA). That is to say their red blood cells are normal in shape and function. On the contrary, someone who has sickle cell trait (like my parents) are carriers of a single sickle cell gene (AS). Therefore, they were able to pass it on, but were not affected as far as acute pain or complications. It is important for me to say, “Not every individual with sickle cell trait are exempt from the complications of the disease, however, the majority are.” Most people who live with sickle cell trait feel well and usually live an active and healthy life. Now, as it relates to those with sickle cell disease (like Monica and I), at birth two sickle cell genes (SS) are inherited, one from each parent. Like our parents, we too are carriers, but we are also affected by every complication of the disease."
"Great question. Someone without sickle cell disease have normal hemoglobin (AA). That is to say their red blood cells are normal in shape and function. On the contrary, someone who has sickle cell trait (like my parents) are carriers of a single sickle cell gene (AS). Therefore, they were able to pass it on, but were not affected as far as acute pain or complications. It is important for me to say, “Not every individual with sickle cell trait are exempt from the complications of the disease, however, the majority are.” Most people who live with sickle cell trait feel well and usually live an active and healthy life. Now, as it relates to those with sickle cell disease (like Monica and I), at birth two sickle cell genes (SS) are inherited, one from each parent. Like our parents, we too are carriers, but we are also affected by every complication of the disease."
If you can compare sickle cell to anything, how would you describe what it's like to have the sickle cell disease?
"Hmm. I'm not sure if I can compare sickle cell disease to anything, at least not right now. However, I would describe having this disease to be very challenging in a number of ways. Growing up as a kid, there were many things I could not do, because the chance of me having a sickle cell crisis. While my brother went outside to play, I stayed behind looking out the window because of the possibility of overexerting myself and getting sick. Although I came to terms with being limited in what I did, and now do, the challenge of this disease has not prevented me from achieving my goals."
"Hmm. I'm not sure if I can compare sickle cell disease to anything, at least not right now. However, I would describe having this disease to be very challenging in a number of ways. Growing up as a kid, there were many things I could not do, because the chance of me having a sickle cell crisis. While my brother went outside to play, I stayed behind looking out the window because of the possibility of overexerting myself and getting sick. Although I came to terms with being limited in what I did, and now do, the challenge of this disease has not prevented me from achieving my goals."
Is there a support group for individuals with sickle cell? How do you gain the support you need?
"Yes there are support groups and foundations for individuals with sickle cell. In fact, the James R. Clark Sickle Cell Foundation in Columbia, South Carolina support those living with sickle cell. As for me, I gain the support I need from my family, loved ones, and friends. My number one support group/system is my mother. She has been all the support I have needed throughout my life. "
"Yes there are support groups and foundations for individuals with sickle cell. In fact, the James R. Clark Sickle Cell Foundation in Columbia, South Carolina support those living with sickle cell. As for me, I gain the support I need from my family, loved ones, and friends. My number one support group/system is my mother. She has been all the support I have needed throughout my life. "
How can people help spread awareness?
"In order to spread awareness, individuals need to first learn about the disease. People can help spread awareness by being proactive. Today we are living in a social media society, so we can be proactive through the world of social media (Facebook, Twitter, Instagram, etc.). In addition, people can spread awareness by word of mouth. I like the slogan, "Each one, teach one." Many people know of someone who has been affected or knows someone who is affected by sickle cell. If we take that individual into consideration in bringing awareness, more individuals will be aware of sickle cell disease. This blog/article is also another tool in bringing awareness to others of sickle cell disease. So, thank you for your willingness to bring awareness of this disease to others!"
"In order to spread awareness, individuals need to first learn about the disease. People can help spread awareness by being proactive. Today we are living in a social media society, so we can be proactive through the world of social media (Facebook, Twitter, Instagram, etc.). In addition, people can spread awareness by word of mouth. I like the slogan, "Each one, teach one." Many people know of someone who has been affected or knows someone who is affected by sickle cell. If we take that individual into consideration in bringing awareness, more individuals will be aware of sickle cell disease. This blog/article is also another tool in bringing awareness to others of sickle cell disease. So, thank you for your willingness to bring awareness of this disease to others!"
To learn more about Sickle Cell, visit the Sickle Cell Disease Association of America website: http://www.sicklecelldisease.org/
