September 15, 2023
In honor of National Sickle Cell Awareness Month, AABB News is sharing stories of sickle cell warriors, a group of patient advocates and their loved ones, who are raising awareness of sickle cell disease.
Tiffani Jackson was diagnosed with sickle cell disease at birth and spent much of her childhood in hospitals. As a journalist and diversity and inclusion reporter, Tiffani is committed to raising awareness about the inherited blood disorder to break the stigmas surrounding SCD. Her efforts include hosting community blood drives, educating her peers on donating blood, and advocating for a diverse pool of blood donations on her college campus.
Learn more about Tiffani's journey below.
“I'm grateful for ImpactLife's Red4Life Sickle Cell Program for raising awareness and providing relief for people with SCD.”
Because of SCD, Tiffani Jackson, 25, spent much of her childhood in hospitals, which resulted in homeschooling to monitor her health. Her hospitalizations increased while attending college due to her intense workload. However, Jackson refused to let the disease slow her down. She pursued a journalism degree, and in 2018, she founded Illinois State University’s first Black news team, training 20-30 new students in journalism skills each semester. Jackson said she hopes her story will inspire others.
“With sickle cell, you grow up hearing so much about life expectancy and limitations, which impacts your happiness. You have to decide if you’re going to beat the odds,” Jackson said. “I don’t want to just be remembered for having SCD. I want to be remembered for doing something that impacts others. I’d rather make the world a better place with my purpose than let a disease tie me down.”
Since starting her journalism career, Jackson noted she’s been able to encourage other sickle cell warriors with similar career aspirations. “They didn’t think it was possible to do this because of the challenges we face, but having a disease doesn’t mean you have to be restricted all your life. That’s why I go hard at everything I do,” Jackson told AABB News.
Jackson noted she frequently fell behind in college because of monthly hospitalizations. The misunderstanding with professors opened her eyes to the need for education about SCD on college campuses.
“It’s very hard to explain how serious SCD is and how you can have a crisis out of nowhere. Teachers don’t always understand, especially if it’s a White teacher or someone who doesn’t know about diseases that impact people of color,” Jackson said. “Most teachers think you automatically make a recovery, but it’s a process.”
Patients with SCD also face stigmas in health care settings due to implicit bias, she pointed out. “Not all health care providers understand SCD, or they have misconceptions about it, which is extremely difficult. They think you’re a drug addict because you constantly ask for medicine, though medication is an option for alleviating pain.”
Jackson encourages sickle cell warriors to advocate for themselves in every situation. “You have to be brave enough to deal with the hardships of being misunderstood and stand up for yourself, even in the hospital setting. Medical professionals are supposed to be the ones caring for you, but not everybody has taken away their bias, so sometimes you must be the one to educate them on how you should be cared for,” she said.
Jackson, who describes a sickle cell crisis as the tip of broken glass stabbing her bones, said blood transfusions provide her with immediate and long-term relief and help to alleviate pain.
“A lot of people with SCD would be suffering constantly without transfusions, but now we have a treatment to look forward to,” she said. “A sickle cell crisis can be life-or-death. Being able to get a blood transfusion can help prolong your life after having a crisis. The moment you get a match and a donor with your blood type, you think, ‘Wow, I could live a little longer and I don’t have to keep suffering through this pain, because somebody else thought enough about me to want to donate.’”
Research shows the best match for a blood transfusion is from a Black donor. However, the number of patients with SCD needing blood transfusions exceeds the number of Black blood donors. Increasing blood donations in the Black community begins with education to eradicate legitimate fears, Jackson said.
“The fears within the Black community regarding medical settings are not unwarranted because of the history of medical racism in this country, such as the Tuskegee Syphilis experiment. It can make it hard to think beyond self and help others,” Jackson stated. “Education is the first step. The knowledge gained after hearing other people’s stories can also motivate people to get involved and make a difference.”
As a Red4Life advocate, Jackson collaborates with ImpactLife to host community blood drives and share her sickle cell journey to raise awareness. She said volunteering with ImpactLife reminds her that she’s not alone.
“I didn’t know there was a specific program dedicated to helping people who have debilitating diseases like me,” Jackson said. “A lot of times I feel like I’m the only one, but I discovered I don’t have to do this by myself. ImpactLife is dedicated to the cause and plays a huge role in providing relief to people with SCD in Central Illinois through blood transfusions.”
She added her involvement also educated her on the overall importance of blood and blood donations. To that end, she started advocating for more blood donations from people of color on her college campus and educating her peers on donating blood. People have come out to blood drives and donated because they knew about her journey, she pointed out.
“The Red4Life Program specifically helps people with SCD. I truly appreciate ImpactLife and how it advocates in the community by hosting blood drives and providing resources to break the stigmas surrounding SCD from miseducation,” Jackson said.
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