“How Long Do People with Sickle Cell Live?”

This last question is one I am generally asked by people who are either particularly close to me or especially outgoing. It’s a topic I’m comfortable talking about and it doesn’t bother me when asked the question. It would be easy to be sarcastic and say, “I don’t know, how long are you going to live?” But sarcasm doesn’t help educate people.

When I was born in 1973—back when I had to walk up hill both ways, in three feet of snow, barefoot, and with nothing to wear but a potato sack—children born with Sickle Cell Anemia in the United States generally lived to be seven to twelve years old. As I have grown up, I’ve watched as that young age increased to be twenty years old, then thirty years old, and up to where it is today, forty to sixty years old. What a joy it is to know, if I live responsibly and take care of my health, that I could live nearly a full life!

If you do an Internet search of, “oldest living person with Sickle Cell Disease,” you will find some inspiring information. In the United States there is a woman who is eighty-five years old; in Nigeria there are references about an eighty-seven year old woman; both are living with Sickle Cell Disease. I have to admit, the first time I read the article about a woman in her eighties who’s living with Sickle Cell, it blew my mind. Think of the hope the life of those two women bring to everyone living with our illness.

Currently I am thirty-nine years old. When I was a child, I never dreamed I‘d live to be the age I am. In this case, what a delight it has been to be wrong, and how thrilling it is to think I could live another fifty years. Living with Sickle Cell Anemia is hard, there’s no doubt about that. Admittedly, there are moments when the complications and pain of Sickle Cell cause me to want to leave this life and cross over to the next; but those are moments, and they pass. Believe me when I say, there is joy greater than the pain you endure. Life is worth living.

When you are talking with others, if somebody asks you the, “how long will you live” question, choose not to take offense. Rather, take the opportunity to enlighten them. Tell them how short of a life children born with Sickle Cell use to have, verses how long you can live today if you take care of your body. Tell them about the women who are in their eighties. Tell them you expect to live a long full life. Your friends will share in that joy with you.