INDIANAPOLIS — Hundreds of people, many of them with the debilitating and often deadly sickle cell disease, gathered at the Statehouse on Monday, Feb. 12.
Sickle cell disease affects close to 1,700 Hoosiers.
The chronic condition hardens a person’s red blood cells, making them sticky and C-shaped, blocking the flow of blood. All of it can lead to severe pain, organ damage, infections and sometimes a stroke.
Of the Hoosiers with the rare blood disorder, 87% are Black, with the highest incidents occurring in Marion and Lake counties.
Many of the people with sickle cell disease end up in hospital emergency rooms from the pain.
That’s why advocates say it’s so important to spread awareness about the disease.
“While we’re young, we look like we traditionally fit the bill of those that have suffered from the opioid crisis. That is not our story. We have this thick layer of chronic pain, and we have this acute pain that lives on top, and both need to be treated adequately,” said Jade Parker-Dinkins, who was diagnosed with the disease when she was 18 months old.
Parker-Dinkins is 33 now.
“Oftentimes, sickle cell is such a debilitating and painful disease that we’re often isolated, so we don’t know who is doing what elsewhere, while we’re suffering from sickle cell crisis,” Parker-Dinkins said.
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“Even though people may know of it, they may not understand all the complications and the issues surrounding it. So, there’s a constant need for educating,” Democratic Rep. Cherrish Pryor said.
Pryor said, this session, there are no bills addressing the disease. Pryor did point out though that — in last year’s budget — the state allocated more money to provide more access to care for sickle cell patients and raise awareness about the disease.
“We can also provide more education to doctors and even setting up special programs or grants to make sure doctors are aware of the disease and adequately aware of how to treat the disease as well,” Pryor said.