INDIANAPOLIS — Lena Harvey describes herself as a proud wife and mother.
She moved to Indianapolis when she was a child after she was born in Chicago.
"Here, I definitely found a great home among the people," Harvey said.
When Harvey was just 4 years old, she was diagnosed with sickle cell anemia. For more than three decades, she says her day-to-day was filled with pain.
"Having sickle cell is an everyday fight," Harvey said.
According to the Centers for Disease Control and Prevention, sickle cell disease is a group of inherited red blood cell disorders. It causes the red blood cells to be sickle-shaped, which makes it different for the cells to carry oxygen throughout the body.
"Red blood cells deliver vital oxygen, and that's the thing that makes sickle cell very painful and very fatiguing on your body," Harvey said.
Even at a very young age, Harvey could tell something was not right.
"During that time as a young child, I could really feel that my body was just not keeping up like everyone else's seemed to be," Harvey said.
Now, the 37-year-old Marion County mother understands the scope of the disease.
"I grew up wondering why the pain was so bad, and once I got old enough to understand that oxygen being deprived of any part of the body will essentially kill it, I understood what the pain was," Harvey said. "It was my body slowly dying, just bit by bit, because there's not life-saving oxygen being supplied."
Since then, Harvey said there have been more bad days than good days.
"Pain crisis is one of the things that is very critical because it is a literal life-and-death situation every time," Harvey said.
It wasn't until February 2021 when Harvey found a treatment plan that worked well for her.
"Sickle cell was beating up my body from the inside out," Harvey said. "It was the first time that I could tell a medication was working."
Once Harvey started the new treatment plan, she said she was able to stop taking pain medications, which was something she had done every day for more than a decade.
"I was over my pain threshold almost every moment of the day for quite some time," Harvey said.
Now, at 37 years old, Harvey dedicates her full-time work to helping and advocating for sickle cell "warriors," as they are called.
"It's all I do now," Harvey said. "There is life and hope for sickle cell patients. I just want people to know that."
Harvey said one of her goals is to diminish what she calls "pre-judgement" for people with sickle cell disease seeking care. It's a task she said has only been made worse by the opioid epidemic.
"Judgement and care really don't go together," Harvey said.
Often times, sickle cell warriors don't appear sick, just by appearance, according to Harvey.
"A person like me, you could run into and think, 'Oh my gosh! Look at her! She's so pretty,'" Harvey said. "Yeah. I also have sickle cell, and it almost took me out of there. I can actually say that, honestly, several times throughout my life, since childhood, I have gone toe-to-toe with death."
Harvey added, "There is an added insult to the injury when I go to seek care, and then, I am immediately judged and treated as if I'm drug-seeking, when really I'm just seeking care."
Part of her mission is to remind sickle cell warriors they are not alone and to help families care for and support their loved ones.
Harvey has been married to her husband for 14 years in September. Her son will be 10 years old later this year.
"I would not have been able to make it here without my family and my community members I consider family," Harvey said.
Harvey also credits local organizations like The Martin Center Sickle Cell Initiative.
"If not for them, I wouldn't be sitting here," Harvey said.
Harvey encourages all Hoosiers to consider giving blood, which sickle cell patients often need to keep their bodies healthy.
"Anyone can be a hero instantly," Harvey said. "You just roll up your sleeve. Become a blood donor. That is a simple thing that you can do."
Harvey also encourages people to sign up for Be The Match.
"Just be aware that you never know what a person might be going through," Harvey said. "You never know."