How has living with sickle cell made an impact on your life?
It has made a great impact on my life. Mainly by doctors telling me that I would not live until I was 20, then 30, then 40, well I am now 50 and I am still here. When I was younger I used to ignore it, until I got sick, and then I would pay the consequences and have really bad sickle cell crisis. I did not join any groups because I was scared to watch people with the same disease as me suffer. And I know they were suffering because having sickle cell is one thing, but when one gets a crisis, "oh my god" the pain is unbearable. All the medicine in the world will not help, and some nurses and doctors do not understand and think you are a junkie when all you want to do is GET OUT OF PAIN. I hate sickle cell disease, he has been an enemy of mine all my life. Whenever the pain affects me, I wish I could just climb out of my body, so I do not have to feel such terrible pain. If I ever get the chance to crawl out of my body without commiting suicide, (when I'm having a crisis), believe me I definitely would. Sickle cell has impacted my life, by losing many jobs. Not being able to have more children. It has impacted my life by I can't even go swimming when I want to, especially at night. There are many things that I can't do because of this disease. Also I have not had supportive parents throughout having this disease. My mom died when I was 5 years old, and my dad pretended my whole life like I was normal and basically ignored the disease. He has had no sympathy for me whatsoever. My sisters and brothers just get on with their lives, they don't care whether I have ssd or not, just so as they themselves do not have it. My daughter died at age 22 because she inherited this disease from me. I felt very guilty about that because I have been waiting to die all my life from this disease, and then my daughter inherits it and dies. HOwever, I was an excellent mother to my daughter, and I took care of her all of her life, I was a very supportive parent and told her that I loved her all the time. It is very sad that she is gone, however, I do not blame her for leaving, because the pain is just too much to bear when one is having a sickle cell crisis. So she checked out of this world and I thoroughly understand why. Even though I am very very very very very very sad without her.