When Lynnthese Johnson was diagnosed with sickle cell disease at birth, doctors told her parents she wouldn’t live past the age of 5. Now 35, she’s sharing what it’s like trying to survive.
Sickle cell disease is a genetic condition in which red blood cells that are normally round become crescent or sickle shaped causing blood blockage, pain and other severe health conditions.
There are 411 patients in the greater Milwaukee area who have sickle cell disease, according to the Versiti Research Blood Institute.
“If you’re not walking this type of life, you will not understand it,” she said.
A rough history
Johnson was able to manage the condition as a child, but after giving birth to her two sons, DeJahn Lay, 15, and Dareon Gordon, 9, the disease worsened.
“My legs hurt all the time, and sometimes it’s so unbearable that I can’t walk,” she said.
At 8, she had a stroke that caused brain damage. As a result, Johnson has received blood transfusions every four weeks at Froedtert Hospital since then.
“If I don’t have the transfusions, I will get another stroke and die,” she said.
Blood transfusions deliver healthy blood cells to sickle cell disease patients to prevent other severe conditions like strokes.
In 2022, Johnson was admitted to the emergency room with pneumonia that resulted in cardiac arrest, forcing doctors to perform a tracheotomy to open up an airway so she could breathe.
Managing daily challenges
To avoid health complications, Johnson eats chicken and fish, which are easier on her digestive system.
“Sickle cell makes it hard for me to digest foods and makes my stomach so painful that I can’t eat anything sometimes,” she said.
For physical activity and coping mechanisms, Johnson enjoys taking walks and dancing, though both can be difficult because of body flare-ups.
As a child, Johnson participated on a drill team but found it hard to keep up with the other girls.
“Dance and music was my thing, but I just couldn’t do it with them like that,” Johnson said.
Her cousin, Desaree Smith, says that her passion for dancing and music never faded, especially when line dancing and singing karaoke together.
“She dances so good and it’s like no one can stop her once she starts,” Smith said.
Still, Johnson feels more restricted from doing things she likes.
“The older I’m getting, I’m learning I can’t do certain things anymore because my body is changing,” she said.
As an alternative, she does crossword puzzles, spends time inside her prayer closet and travels with Smith.
Handling pain on her own
When pain crises occur at home, Johnson visits the ER but often waits hours before being seen.
She says health professionals don’t take her pain seriously and have misconceptions about the disease.
“They think we’re there just to get high, and I think they don’t learn about sickle cell enough in school,” she said.
To manage pain, Johnson sticks with Tylenol and avoids stronger medications like OxyContin, tramadol, Dilaudid and morphine because it affects her mood.
“I took myself off all the strong medications because they don’t tell you that the older you get, you have more side effects, plus more anger, when it does nothing for your pain,” she said.
When family comes together
Although Johnson’s journey is challenging, her family is always near to support, especially her sons DeJahn and Dareon.
DeJahn says watching his mom go through sickle cell has changed him for the better.
“Her having sickle cell made me grow up faster and more mature. I like helping her around the house and taking care of her when she’s having her moments,” he said. “I just step up as that role model, big brother and son that we need.”
DeJahn said the best part about watching his mother is seeing her confidence grow over the years.
“Although she has a trachea that’s visible, it makes me happy that she isn’t ashamed of herself anymore,” he said. “When I’m with her, I don’t even realize that it’s there.”
Johnson’s parents and Smith also help by caring for DeJahn and Dareon when she’s in the hospital. Smith commutes from Kenosha to Milwaukee.
“We were taught as a family that we are everything together and nothing apart. So we come together and make an itinerary for when she has to be away,” Smith said.
Admiring a mother’s strength
DeJahn wants his mom to know that she’s strong and has a purpose. He hopes that she continues to use her journey to inspire others.
“Maybe God wants her to use her sickle cell journey in a good way to show others who don’t express their feelings that they don’t have to hide in the shadows and it’s OK to have sickle cell,” he said.
In 2023, Johnson received a phlebotomy technician diploma and became a caregiver so she could open a respite house one day.
“I want to know all the medical stuff before I open it,” she said.
DeJahn says he’s proud of how far his mom has come and wants nothing but to see her happy.
“My mom has been going through things her whole life, and I can’t take nothing back that hurt her, but I can definitely make sure her future is as best as it can be,” he said.
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