Diagnosed with sickle cell disease at the age of 2, James Griffin endures pain and hospital stays on birthdays and holidays.
“Just talking and sharing about what I’m going through has helped me get through this journey,” said Griffin, who is now 44. “The ones who don’t have that outlet or support are the ones that fall through the cracks.”
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.
Griffin’s mother first became concerned after hearing him scream and seeing his swollen hand.
“My mother said my hand was the size of a baseball,” Griffin said.
Blood tests confirmed the diagnosis, and Griffin’s parents learned they were both carriers of the sickle cell trait.
According to Phillip Doerfler, associate investigator at Versiti Blood Research Institute, people with sickle cell disease inherit it from their mother or father.
A study shows that one in every 13 African Americans in the U.S. have the sickle cell trait. Other races or ethnicities can get sickle cell disease, but it’s most prevalent in the Black community.
Regular checkups
Doctor visits have become routine for Griffin as he sees a hematologist every three months for blood draws at the Sickle Cell Disease Clinic at Froedtert & the Medical College of Wisconsin. When a pain crisis occurs, he goes to a nearby hospital.
“Hospital visits are like a routine for me, too. When I go through the pain, I can’t use the clinic, so I have to rely on the emergency room,” he said.
If admitted to the hospital, Griffin receives IV fluids and medications. If pain continues, he undergoes a blood transfusion.
“Blood transfusions help me a lot because without it, I can’t get through the pain on my own,” he said. “It gives me more energy to do normal activities.”
According to Versiti Research Blood Institute, there are 411 known sickle cell patients in the Greater Milwaukee area. Many of them require blood transfusions every three to four weeks and need over 60 red blood cell units each year. The safest option is a rare blood type called Ro, but only about 4% of donors have it.
“That’s why it’s so important for us to engage with Blacks and African Americans to donate because that’s where people with sickle cell disease in the U.S. are from,” Doerfler said.
Making lifestyle adjustments
Every morning, Griffin takes 45-minute walks at Hoyt Park in Wauwatosa as part of exercising.
“You have to move your body because blood has to circulate. If it’s not circulating then you’re going to have blockages and pain,” he said.
To maintain his health at home, Griffin eats baked foods, fruits and vegetables and avoids anything with high sodium that could trigger other conditions.
“Because I have sickle cell, I can have secondary illnesses like high blood pressure, too. I read the label of everything to make sure I’m not having a high intake,” he said.
Griffin said he’s also learned how to care for his body in extreme weather. In the summer, he drinks more water to lower the risk of strokes, and in the winter, nurses remind him to bundle up to prevent pain.
“The cold can make my blood vessels constrict,” he said.
Combatting misconceptions
Another challenge for Griffin is the misconceptions he faces about the disease. He said that many people don’t believe the pain level patients are under.
Griffin said people who return to the ER multiple times are mistaken for “drug seekers” for relying on medications like opioids to rid their pain.
“People are getting stigmatized for something they are born with,” he said. “There’s no other way we can do it when we’ve tried everything at home.”
Another common misconception Doerfler points out is people think patients will outgrow the condition when they’re older.
“Sickle cell disease patients get better at managing their pain, especially as they educate themselves on the disease, but you don’t outgrow the disease itself,” Doerfler said.
Griffin was 22 when he first was stigmatized by health care professionals at a local hospital. He sat in the hospital for five hours waiting to be seen.
“The nurse who saw me at the time asked if I was in so much pain, then why didn’t I come sooner,” Griffin said.
Griffin was disappointed in the doctor’s lack of compassion after only providing him with one dose of medicine.
“There were no tests ran, no IVs or fluids given. Just medication,” he said.
Having a support system
To keep him going, Griffin relies on his family.
Growing up, Griffin often missed school because of long hospital stays. His two oldest siblings made sure he kept up by bringing his homework.
“Usually, I was in there for weeks because it would take a lot to get rid of the crisis as a child,” Griffin said.
For Gregory Griffin, James’ oldest brother, the best way to support him was being present during long hospital stays.
“Just being present, being encouraging and bringing laughter to him when he’s having a crisis goes a long way,” Gregory said.
Watching his brother go through sickle cell disease also inspired Gregory to help others with the same condition.
In 2017, Gregory hosted a “bowl-a-thon” fundraising event through his educational podcast called DreamSports. The money raised was donated to the Sickle Cell Disease Foundation in honor of James.
The Griffin family shares a love for sports, especially football. James once dreamed of playing, but the sport was too intense for his body.
“My body couldn’t handle it because I was losing oxygen, and I would become more tired than my friends,” James said. “When my friends found out, they didn’t pressure me to play.”
Gregory said it was hard to see his brother unable to do all the things he wanted to do.
“It was kind of sad because we would talk sports and we would play sports in the neighborhood, but he couldn’t really commit fully to playing high school sports, and so I know how hard that was for him,” he said.
Instead, their mother encouraged James to explore other interests like music and art.
“She was always trying to get me to do other things like work with my hands,” James said.
In terms of other support, Griffin also relies on friends. But that wasn’t always the case.
He didn’t reveal his condition to his peers until his early 20s.
“I didn’t speak out because I was ashamed of sickle cell and didn’t want to be judged, and I didn’t want to be treated differently,” he said. “When I was 8 and spoke out about my condition on the playground, children started running away from me.”
Stepping out to advocate
Currently, Griffin is a medical assistant at Children’s Wisconsin, where he tries his best to educate people on sickle cell disease.
“I understand what they’re going through, and I can treat them from a certain level as if I wanted to be treated, because I remember being in their shoes,” he said.
In 2015, he shared his journey by publishing “Breaking Silence: Living with Sickle Cell Anemia.” He was moved when a parent told him the book helped understand their child’s condition better.
“I feel like if I can reach one person like this, then it’s important for me to continue to speak out,” he said.
Other ways Griffin advocates include being involved with nonprofits and visiting universities to share his story with individuals in the medical field.
He also participates in sickle cell disease walks led by different hospitals, but one day he hopes to lead his own.
Gregory Griffin said his brother’s strength and resilience motivate him on tough days.
“He’s the true definition of strength, and it motivates me to know, if he can deal with this for all of his life, then a bad day here and there for me is not the end of the world,” Gregory said.
Jonathan Aguilar is a visual journalist at Milwaukee Neighborhood News Service who is supported through a partnership between CatchLight Local and Report for America.
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