By Karen Stokes
Elodie Ontala Babongui in Milwaukee who has been living with sickle cell disease since diagnosed at three years old. (Photo by Karen Stokes)
Elodie Ontala Babongui is a beautiful, educated woman that has a great job and is engaged to be married next year. The day I met her she was full of energy. That was a good day. Unfortunately, every day is a question mark concerning her health, living with sickle cell disease.
“I was three years old and was getting sick a lot, my feet were swollen and we didn’t know what it was because I wasn’t tested as a baby,” said Elodie. Sickle cell affected my childhood in a lot of different ways. I didn’t get to participate in a lot of activities, my cousins would go outside and play soccer and climb trees and I would mostly be inside.”
“Sickle Cell Anemia is a genetic disease which alters hemoglobin,” said Dr. Matt Karafin, transfusion medicine pathologist at Versiti Blood Center. “When a person has low levels of oxygen or [is] sick, those red cells change shape and become sickle shaped and blood passing through tiny capillaries don’t flow well. When that happens, it causes all the major symptoms of the disease.”
Karafin says one of the most common symptoms of the disease is pain and it can affect all parts of the body where blood flows. It can cause stroke, kidney disease or make the spleen functionally ineffective. In adults, many patients have joint problems.
Elodie explained: “on a daily basis getting up can be hard. There was a time when I had to live with pain. We all find a way to live until the pain gets to a certain point [then] you go to the Emergency Room. It can be really scary and debilitating. I personally have felt like giving up because you have momentum then you get slammed into the ‘tree’ (sickle cell).”
Evelyn Islam is 4 and was diagnosed with sickle cell at birth. On Saturday, September 28 Evelyn’s Circle blood drive will be held at Sherman Phoenix from 9am-2pm (Photo Courtesy of Melissa Nicole Goins)
When asked about her worst day, it was two years ago on September 20, 2017: Elodie was then 29 and had suffered a stroke that left her unable to see out of her left eye. Since that day, she’s been on chronic blood exchanges at the infusion clinic at Froedtert.
“They deplete my red blood cells and transfuse me with eight more units. It’s taking all the sickle red blood cells with no oxygen and gives me fresh blood,” Elodie said. “I have to do this every five weeks, stay there all day. I’ll have to do this for the rest of my life or until something else is figured out. I’m thankful for Versiti Blood Center for the blood treatment to stay healthy. The treatment allows me to be a little bit more active.”
“We try to match red cells closely to the patient as possible,” Karafin said. “The best match for a person of African heritage is another person of African heritage.
When asked about her best day, in 2011, prior to the stroke, Elodie lived in China for a year and she was very diligent about her health, which included taking her medication and drinking a lot of water. She didn’t get sick while there. “One of the things that made me very happy is [when] we went hiking on this mountain, it was the longest hike I’ve ever taken but I made it to the top. Afterwards, I wasn’t sick, I wasn’t tired, went out to dinner that night, went to the bar, came home went to sleep, woke up and nothing happened. It was great and I think my being diligent and staying hydrated helped but also, I got lucky. The day we came back to the U.S. I got sick, it wasn’t sickle cell, it was the flu, again I got lucky,” said Elodie.
Support is extremely important whether it’s personal or medical support.
“I’m lucky that my support system is very active in my life. My fiancé Evan goes out of his way to make smoothies every morning filled with nutrients for breakfast and my lunches. A lot of people don’t have a support system,” said Elodie.
Sickle Cell disease is not only difficult physically but also mentally. Depression and anxiety are the most prevalent. It was explained to Elodie that when she’s experiencing a lot of pain, there are brain sensors that get activated to protect her system and even when they’re not in pain they are still on because they protect from the signal.
“It’s fight or flight so you never relax, your brain never shuts down so with that comes a lot of anxiety,” Elodie said.
Karafin said that there are cures but they are all potentially risky. Bone marrow transplants would potentially cure the disease, but a bone marrow transplant is risky for any reason. The preparation for bone marrow transplants could be fatal. Surviving the transplant is risky and the biggest barrier is finding a donor that matches. The best donor is usually a sibling that doesn’t have sickle cell.
“In terms of treatments, if you’re looking for treatment of acute issues of sickle cell, there’s pain management and fluids,” said Karafin. “If the pain is hard to manage, there are chronic therapies—the most standard is chronic blood transfusions. There are new drugs on the horizon, some are close to FDA approval. There are more options to manage the disease that weren’t available two years ago.”
September is Sickle Cell Awareness Month and donations for research and donor registration will have a profound effect on individuals living with sickle cell.
According to Versiti.org:
• Sickle cell disease affects approximately 1 in every 400 African-American newborns in the United States.
• Patients who have the most severe form of sickle cell disease have an average life expectancy of only 42 years (men), 48 years (women).
• Since October 31, 1988, all babies born in Wisconsin are tested for sickle cell disease through the Newborn Screening Program.
Melissa Nicole Goins is the mother of a spirited four-year-old named Evelyn. Shortly after birth, Evelyn was diagnosed with Sickle Cell Anemia. She was seven months old when she received her first blood transfusion and has had 22 transfusions in her life. Because there is a need for blood donors, Goins has organized a blood drive.
“When you look at who registers, there’s not an abundance of non-white donors,” said Goins. “Typically, a person will match someone of the same ethnic origin. Each person who donates can help up to three people per donation.”
On Saturday, September 28, join Evelyn’s family at Sherman Phoenix, 3536 W. Fond Du Lac Ave. for Evelyn’s Circle Blood Drive from 9 a.m.-2 p.m.
To donate, visit: bit.ly/esblooddrivesep2019 or call 877-232-4376