One woman's struggle with sickle cell disease and 3 things she wishes you knew
Posted: September 24, 2018 | Word Count: 812
When Tosin Ola was a baby, she cried a lot. It wasn’t because she was hungry or cold. Tosin cried a lot because of something much worse, and her parents had no idea what it was. They thought she was simply a cranky toddler.
But Tosin was not a cranky toddler. Instead she was a child with sickle cell disease (SCD).
A grim diagnosis
Tosin was born in Nigeria, a country without infant screening for the disease at the time. SCD, a lifelong, inherited blood disorder, impacts the flow of blood and oxygen to the body due to a genetic mutation that leads to the damage and destruction of red blood cells. This causes chronic anemia, leading to fatigue, and inflammation, leading to severe pain. Over time, the cumulative effects of living with this chronic disease can cause organ and tissue damage, stroke and premature death. People with SCD typically live until their mid-forties.
Tosin learned this early on. She was not diagnosed with SCD until the age of 4 when her parents took her to a military hospital. The prognosis was grim, with the doctors telling her parents that she would likely die in childhood.
Tosin was in the room during this conversation and the rage she felt at hearing her own predetermined fate motivated her to fight to live. With her family, she moved to the United States a few years later, where she was hospitalized once or twice a year for bouts of severe pain during her childhood.
Finding a voice
It was a hospitalization in 2005 that changed Tosin’s life. She had been in the hospital for two weeks, and as the only person in her family with SCD, felt very isolated. As she looked for resources online about self-management of SCD, she found nothing. Tosin knew that had to change, and from her hospital bed she started Sickle Cell Warriors, the largest online patient-run community for SCD in the world.
With the support of her family, and in particular her mother, what started as a simple blog now has more than 22,000 members around the globe, and it all started with a woman who followed her voice.
Continuing to teach
These days Sickle Cell Warriors is larger than ever, but Tosin, a registered nurse and mother of twins, never passes up the opportunity to share information about SCD with anyone who will listen, including rideshare drivers. For those who know very little about the disease, Tosin says these are the three most important things to know.
1. You can help eradicate the disease just by finding out if you have the trait. An SCD test is not run on adults unless you ask for it, but you can request it as part of your annual blood work. While it’s most common among people of African descent, SCD can also affect people with Latin American, Mediterranean or Middle Eastern heritage, no matter how distant the genetic link. If you do have the trait, educate yourself on how you can avoid passing the trait or the disease on to the next generation.
2. SCD patients are not pain medication seekers. Tosin likens the pain to prolonged episodes of throbbing, deep pain, similar to when you break a bone or have a severe migraine. Tosin was in labor to give birth for 12 hours before she realized it, as it paled in comparison to an SCD pain episode. There is no approved treatment for the underlying cause of SCD so many patients end up in the emergency room during pain episodes. As an “invisible” disease, the lack of objective methods to measure pain means that emergency room staff are often skeptical and assume SCD patients are addicts. Tosin has faced disbelief and judgment while trying to get help, to the point where she sometimes avoids the emergency room. At these times, she prefers to suffer at home than deal with the staff which can worsen the long-term damage of the disease.
3. SCD is more than just pain. While pain is commonly associated with SCD, pain is just one of many symptoms of the disease. In addition to the pain, the ongoing shortage of red blood cells leads to chronic hemolytic anemia which causes a cascade of symptoms including hypoxia, vascular injury, progressive end-organ damage and premature mortality. Tosin suffered strokes as a child, is prone to jaundice and infection, and has necrosis in her hip due to ischemia, which will require the replacement of both hips in her late thirties.
Tosin’s SCD is a part of who she is, but she is quick to point out it isn’t all of who she is, nor should anyone with SCD be judged based on their condition. “We are regular people just living our lives,” she said. “We aren’t always the patient in the bed.”
Instead, they are warriors with a mission.
To learn more about the Sickle Cell Warriors, visit www.sicklecellwarriors.com.
Sponsored by Global Blood Therapeutics, Inc.