It doesn’t happen daily, but 11-year-old Billie Robinson experiences random pain. Sometimes it just goes from one part of his body to another.
At 9 years old, Jordan Dickey also endures pain. It flares up when it’s too hot or too cold outside and prevents him from playing with friends outside at recess.
When Robert Ward wakes up for class at Purdue University Fort Wayne, he feels a soreness in his knees. At 19 years old, he said the pain is starting to affect him more.
While all three look healthy from the outside, they’ve been battling sickle cell disease from an early age.
According to the U.S. Centers for Disease Control and Prevention, sickle cell disease affects more than 100,000 Americans, and about 1 in 13 blacks are born with the sickle cell trait.
Those born with the sickle cell trait do not experience medical problems like individuals with the disease, but they can pass the gene on to their children. People with a sickle cell disease have inherited two sickle cell traits from their parents.
To prepare for Sickle Cell Awareness Month, Beverly Lymon, the sickle cell care coordinator at Beacon Memorial Hospital in South Bend, has scheduled activities to bring awareness to the city through the North Central Indiana Sickle Cell Initiative, which is based in South Bend but also covers the Fort Wayne area.
On Saturday, more than 1,700 red ribbons will be tied on lampposts around the city, starting with the Dr. Martin Luther King Jr. Memorial Bridge.
A few days later on Wednesday, Purdue Fort Wayne will hold the annual Sickle Cell Empowerment Conference at Walb Student Union from 9 a.m. to 3 p.m.
A series of crises
Sickle cell disease is a hereditary group of red blood cell disorders. Those with the disease have an abnormal hemoglobin in their red blood cells.
Instead of being perfectly round, the hemoglobin form a crescent shape. When they stack together, blood flow is hindered, which means oxygen is not able to get through.
This can cause episodes of pain anywhere in the body, known as a crisis.
“We try to teach the children early, when they first begin to have a pain, they need a distraction, like try to listen to music or keep warm,” said Ruth Reese, a part-time registered nurse at Beacon Memorial who works with children affected by sickle cell.
The crisis can vary from person to person, lasting anywhere from a day to more than a month, Reese said.
“We can’t control when the crisis happens,” Ward said. “You can be perfectly fine one day, and then the next day wake up in excruciating pain.”
To help treat the disease, Dickey and Robinson were prescribed hydroxyurea, which reduces their number of crises. But for Ward, the medication had little effect, so he receives regular blood transfusions.
If successful, bone marrow transplants can cure sickle cell disease, but typically the donor has to be a sibling.
Bridging the Gap
Dickey, Robinson and Ward have all been involved with Bridging the Gap, a group that helps educate youth with sickle cell.
The group was created in July 2017 by Sue Taylor, manager of early childhood services at Beacon Memorial.
An advocate for decades, Lymon promotes increased awareness. She currently works with the 12 children enrolled in the group.
Lymon developed her passion for educating the community after losing two siblings who were born with the disease and having the sickle cell trait herself.
During meetings, members are taught about sickle cell and how to stay healthy. Participants bring journals to write about what they are experiencing, and there is also an app that allows the group to connect with others who have sickle cell.
As for this year’s empowerment conference, Dr. Patricia Graves will be the keynote speaker.
Graves, an oncologist from Memphis, Tennessee, will highlight what adolescents with sickle cell should do once they graduate and progress to adult medical care.
“We hope when one leaves our conference, they will be enabled to take better control in aspects of their life that they need to take a little more initiative in, like communicating with their doctor about their health care,” Lymon said.
Lutheran Health Network, which has a clinic for sickle cell patients led by Dr. Dennis O’Brien, will also have several doctors speaking.
State Rep. Gregory Porter will speak about the sickle cell crisis on a public health note, and Mayor Tom Henry will be proclaiming September 2018 as Sickle Cell Awareness Month in Fort Wayne.
Through the ribbon tying and conference, Lymon hopes to identify resources available and empower those with sickle cell.
“This is just a small way we can give recognition to the true warriors in our community who suffer with sickle cell disease,” Lymon said.
Since joining Bridging the Gap, parents agree they have seen changes in their child and how they approach health care.
“When they have other children and they see there’s other kids that’s like them, that’s going through this, they’re not by themselves,” Valerie Walker, Dickey’s grandmother said. “They’re not stuck in a corner somewhere by themselves.”
As for the children and parents in Bridging the Gap, they hope one day they can be free of sickle cell and that other children will never have to experience it.
Until that day, Ward wants to continue to inspire younger children and help them fight.
“Now that I’m older and in college, I’ve been through a lot, so I can go back to the younger kids, like their age, who have sickle cell, and just tell them the ways I’ve pushed through it and I didn’t let it deter me from doing anything that I wanted to do,” Ward said.