Stacey Sottile is a sickle cell “warrior” who was diagnosed with sickle cell disease at age 11. In a Q & A with the AmNews, she talked about living day in and day out with the disease, being a warrior, her published books, and new advances in the treatment of sickle cell disease. (This interview has been edited and condensed for clarity.)
AmNews: Could you tell the AmNews readers about your sickle cell disease journey?
Sottile: I go by Sickle Cell Warrior or Sickle Cell Advocate … I was diagnosed with Sickle Cell Genotype SS. SS people experience more pain crises. When I was 11 months old, my parents found out [that I had this condition]. I have spent my whole life fighting sickle cell with different pain crises, pneumonia several times, a lot of bacterial infections, and something called acute chest syndrome, which is sort of like pneumonia — it’s like a pain crisis in your lungs and is very dangerous. I was having a lot of those.
About 10 years ago, I was in and out of the hospital all the time with that and my doctor was concerned, so he put me on transfusion therapy. I go for blood transfusions — they’re called exchange transfusions — where they take the bad sickle cell blood out of my body and they replace it with donated healthy blood. I go for those treatments every six weeks and that’s been pretty much keeping me out of the hospital. I went from being hospitalized about seven to eight times a year for anywhere from a week to two weeks to now, maybe once a year, I’ll go in for a pain crisis, so it significantly changed things for me. I’ll be 53 in October and I have two boys. One is an adult — he’s 25 — and the other one is 17.
AmNews: You recently authored a book. Could you tell the AmNews readers about that?
Sottile: I’m a writer. I graduated from Baruch College in creative journalism and I published a poetry memoir book years ago, but I just published my first children’s book on sickle cell disease. I’m happy. It’s called “Guess Who Mama Pooh,” which is a childhood name. It’s loosely based on my life as a little girl growing up in Queens with sickle cell disease.
AmNews: Why is having a Sickle Cell Awareness month so important?
Sottile: As someone living with sickle cell, it’s a big deal. June 19 is also World Sickle Cell day. Sickle cell is not an American Black disease. It’s important to know that, even though people in the African diaspora have more people with sickle cell. Within our community, I’ve met older people from different national backgrounds — Italian, Greece, Irish, all over the world. That’s another myth or stigma that’s out there that works against productivity and finding a cure and funding and treatment. Sickle Cell Awareness Month is very important for warriors because actually advocating does give us a purpose — it gives you that power. Sometimes when you go to a hospital, you might be misunderstood.
We definitely need more doctors to study the disease. Sickle Cell Awareness Month is a great way to gather in the community and to get out there, to go into the hospitals and speak to the people who treat sickle cell so once someone comes in the emergency room or makes an appointment with them for treatment, they have an idea of what this disease is really about.
AmNews: Is there anything else you want people to know about being a Sickle Cell Warrior?
Sottile: I’m 53 and we are living longer. We have people who have sickle cell disease that are in their 70s and 80s. Progress is being made because of different forms of treatment. I have been around longer with the illness, so I know the things that I should be doing. If I go out, I have to stay hydrated. I have to make sure I don’t overexert myself. I can pretty much live a productive, full life.
It is an invisible illness, so a lot of time, people will look at me or other people with sickle cell and say things like, “Well, you don’t look sick.” It can be misleading because people can get a lot sicker than they actually look. Having sickle cell is kind of like a double-edged sword.
A lot of progress is being made as far as treatment, but there are still many hurdles that we have to get over. There’s a stigma. Some people either don’t want to admit that they have sickle cell because they feel like they’ll be judged or they won’t be able to be hired to work full-time. It’s not a death sentence. I was able to go back to work.
[I want to give] hope to the people who are coming up and the parents who may have had a recent diagnosis for their child, just to give them some inspiration, to let them know it’s not a death sentence.
Olá , meu nome é Elvis, moro no Brasil e fiz um transplante de medula óssea em 2005, há 20 anos. O que melhorou muito minha qualidade de vida! Em 2013, escrevi um livro chamado “Quatro Décadas de Lua Minguante” onde conto minha trajetória de lutas até o transplante.
Faço parte de uma federação que luta pelas pessoas com doença falciforme no Brasil e somos 56 associações ❤️