ZIONSVILLE, Ind. — Laughter and loud voices filled the Christmans’ living room on a summer night as 11-year-old Michelline competed against her parents in the board game “Trouble.”
The pop of the dice and clack of moving pegs was drowned out by playful “trash talk” as the competition heated up.
It’s what Jodie and Jay Christman described as an ordinary night in their household, a chance to pull their sixth-grader away from screens and into family time.
Today, the Christman home is filled with photos of a happy family of three, but just a few years ago, it looked a lot different. The husband and wife had long hoped to expand their family.
“We always wanted to have kids, but we said ‘OK, it’ll happen when it happens,’ but it just wasn’t ever happening,” Jodie said.
That’s when the couple turned to adoption — a process that would take four and a half years.
The Christmans chose to adopt from Burkina Faso in West Africa, and in 2020, they were matched with Michelline who, at the time, didn’t speak any English.
They spent the next two years Facetiming with their adopted daughter. They were finally able to bring her to the U.S. in July 2022.
The transition from a family of two to three wasn’t easy. Along with teaching their daughter English and adjusting to life together, the new parents faced another challenge — helping Michelline manage her sickle cell disease (SCD).
“I’m proud that I’m unique … unique from sickle cell,” Michelline said.
The National Heart, Lung, and Blood Institute describes sickle cell disease, or sickle cell anemia, as a group of inherited disorders that affect hemoglobin, the major protein that carries oxygen in red blood cells.
Dr. Angeli Rampersad, Michelline’s doctor with Innovative Hematology in Indianapolis, said there are about 1,800 Hoosiers living with the genetic disease. The CDC estimates more than 8 million people have it worldwide.
She explained that changes in hemoglobin alter the shape of the red blood cells from their normal round, flexible form into a C-shape or sickle.
“That blood cell that’s in that shape does not flow properly,” Rampersad said. “It’s unable to make it’s way through the tissues of our body to give oxygen, it blocks the blood vessels in those areas, and people start to feel pain in the area where there’s blockage.”
And those blockages cause what patients call a “pain crisis,” something Michelline is all too familiar with.
“It really hurts so bad, and I could just cry, and you don’t feel good or feel like eating or anything.” Michelline said. “When I get hurt … it’s hard for me to stand up … because my legs are shaking in pain.”
This pain can be brought on from dehydration, cold weather or infections.
If Michelline stays outside in freezing temperatures for too long, or jumps into a pool with water too cold, she could be in for days of agony to follow.
“I think it’s a little embarrassing since I don’t get to go outside for recess, or it’s cold for me to swim when my friends want to go to the pool or something,” Michelline said.
“You don’t know how to help her,” Jodie said. “You can put heating pads (on her) … I mean one day we took six or seven baths just to get warm.”
Rampersad said that, over time, SCD blockages can turn deadly. She said they, “also damage organs, and this can be head to toe. Your brain, people with sickle cells disease do have a risk of strokes, and it can happen very early, as young as two years old.”
Treatments range from antibiotics, especially for the youngest patients, to vitamins and medications that can protect cells.
Blood transfusions can also be vital, improving oxygen delivery and preventing devastating complications. That’s why doctors who treat the condition stress the importance of blood donations.
“We really depend on you,” Rampersad said. “We need other humans to donate blood. It gives a chance for life for these patients when they’re experiencing one of these complications.”
SCD is more common in families with ancestry in Africa, the Middle East or India because the genetic trait once offered protection against severe illnesses like Malaria.
That’s why Rampersad said minority donors are in such high demand.
“There are a lot of other proteins that are in red blood cells that might differ among different ethnic groups,” Rampersad said. “So, you get your best match among members of your community who look like you and your ethnic background.”
Early detection can also make a big difference. Since 1985, all infants born in Indiana have been tested for abnormal hemoglobins, including sickle cell disease.
For Michelline, it’s been about a year and a half since she’s experienced a pain crisis, and her family is focused on staying ahead of them.
“It’s more preventative things that we do,” Jodie said. “She has to drink a lot of water, watch her exercise, don’t overdo it.”
While she doesn’t always like to talk about living with SCD, this Sickle Cell Awareness Month Michelline wanted to share the experiences she’s had living with the disease and show that she’s more than her diagnosis.
“I don’t let my sickle cell stop me from doing things … it makes me proud of being me,” Michelline said.
